It only took days to bring my mood from one of jubilation to complete frustration caused by the forces that are committed to thwart any progress for the treatment of CCSVI. It was April 2nd I believe when I received a call from Holly who is the coordinator for the CCSVI program at Kings County Hospital informing me that my scheduled date to begin testing on June 7th was no longer a confirmed date. She wasn’t able elaborate on any details other than to say the program has been delayed so appointments will have to be adjusted. She told me that Dr. Sclafani would be sending an email to explain the situation but in the meantime, don’t book a flight. This really took the wind out of my sails, I was so close and now I’m left in a state of complete uncertainty. It took a week for Dr. Salvatore Sclafani, he goes by Sal which is how I’ll refer to him, to send out the email explaining things.
The exact circumstances that I was always worried might derail the procedure had indeed come to light. Just as in Dr. Dake’s case at Stanford, the hospital has stepped in to halt all Liberation procedures! The positive part is that no one has used the term cancelled, just postponed. Apparently this all started with an article written in the Wall Street Journal outlining the serious adverse effects that have occurred at Stanford. The result of this article gave the hospital and its owner the idea that they were vulnerable if another adverse event occurred so they felt it necessary to postpone all Liberations until a formal research proposal has been approved. Out of nowhere another treatment alternative has been stopped based on bogus information! First of all why does a financial paper like the WSJ have an interest in reporting on a medical procedure and CCSVI? Based on the conclusions of one reporter who is relying on and propagating misinformation, the procedure has been demonized. I’m floored that the truth regarding the Liberation procedure is not being explained in the media or by MS organizations. The adverse effects being referred to are the slipping of a stent into the heart of one patient that required heart surgery to correct and the unfortunate death of a woman that was not a result of the procedure but the blood thinner medication taken post treatment that caused a brain hemorrhage if I’m not mistaken. Yes these events are very unfortunate but in no way should they lead to the negative stigma now being cast over the procedure. I haven’t read the following week’s column but apparently this same reporter wrote an article singing the praises of an MS drug, this coming from a financial paper…hmmm, I wonder if the big pharm companies have any influence???
The use of stents in the Liberation treatment is very uncommon and as far as I know the only cause of complications resulting from Liberation however the media isn’t interested in reporting on this. Balloon angioplasty is the current treatment standard throughout the world until there is more research on the use of stents. I’m unsure of how many angioplasty procedures have been performed for CCSVI but I have not heard of any adverse effects and we are for sure into the hundreds and perhaps over a thousand surgeries! The simple fact is that the angioplasty procedure is very safe and all the fear mongering about the high risk and safety of the process is completely BUNK! Fortunately there are doctors like Sal who are committed to the cause and genuinely interested in helping patients. He must submit a proposal for a research project and have it approved by the Investigational Review Board of the State University of New York and by the HHC's (the parent company) review board. Dr. Sal is hoping to have an expedited review but realistically this will take 2 or 3 months but he still hopes to be operational in June. I don’t think it’s possible to be as disappointed as I am or anyone else that was on his list for treatment but I know that he genuinely shares our feelings of frustration and distress. In fact he is so committed to CCSVI that he has delegated many of his responsibilities as Chairman of Radiology so that he can focus more of his time on ramping up to perform more Liberation treatments than he had originally planned by the end of the year. He has personally committed to everyone that was on his treatment list that we will be treated as soon as he can resume and commented that we are at the front of the line. I’m not sure how long this line is or if the program will change after being designated as a research project so I’ll just have to wait for more news. Sal really is an awesome doctor, he follows people’s comments on web chat rooms like TIMS (This Is MS) and actually answers questions, posts comments and updates. I can’t hide my disappointment but I am still very encouraged and positive about getting Liberated, I just hope its in time to prevent further damage that I know has taken place in the last few months.
W-5 did another CCSVI report on Saturday, if your interested you can view it on their website w5.ctv.ca, it was another very good story and unbiased in the reporting. Again the views of Dr. Freedman as an expert in MS were expressed and again he made himself sound like a “jack ass”. I think his closed minded approach to MS and overinflated ego has reduced his credibility to zilch! Some of his statements are so hypocritical and make no sense when viewed from a compassionate and pragmatic medical viewpoint. My jaw dropped when he said “why would you fix something that may not have anything to do with the disease?” Where’s the logic in that, if a venous abnormality is discovered and you know that blood is not draining, why wouldn’t you want to fix this?! I’ve had huge differences with Freedman in the past but his recent comments reinforce his treatment biases and arrogance and I know for a fact that many patients have dropped him as their neurologist, as would I in a heartbeat!
We are now seeing positive results from the angioplasty procedure from around the world, so much so that the “anecdotal evidence” is overwhelming. I can’t accept Freedman’s comments that patient improvements could be attributed to the placebo effect as rational thinking. There’s not enough coincidence in the world to explain the positive results flooding in daily from across the globe. The fervour created around CCSVI has been amazing and woken up the world yet some stubborn, ignorant and unyielding members of the medical and scientific community remain asleep clinging to the traditional and unproven theories and treatments for multiple sclerosis. Testing and treating CCSVI is not the answer to MS but definitely an important part of the puzzle. Until we can put the rest of the pieces together we need to capitalize on what we have discovered and provide any hope and relief possible to those of us suffering with the debilitating effects of MS everyday. I can tell you that things are worsening for me if not everyday then by the week and I may not recover from the additional damage being done. Time is of the essence and all players with a vested interest be that patients, doctors, researchers, insurance companies and governments need to accept this fact and act with urgency and compassion. The government of Kuwait has set the example by committing to testing and treating all 6000 citizens with MS! The government of Alberta should stand up and take notice, the societal cost of this disease is enormous and anything we can do to stop it or at least slow it down would be a very wise investment!
LC
Tuesday, April 13, 2010
Friday, March 26, 2010
PROGRESSION BUT NEW HOPE!
It’s been about three weeks since my last blog and there’s been a lot happening. In terms of my health, not so good, I still haven’t stabilized. My walking has really become awkward and deliberate, I still try to walk a little but it is painfully slow. Since this started about three months ago, I have to classify the sustained decline in my functional ability as progression rather than a relapse that I would recover from. It’s more difficult to get around than I can remember in a very long time. If I compare myself to one year ago, it’s night and day. Now that I’ve got the benefit of hindsight, I had great improvement post stem cell treatment. This has changed because the disease has become active again and I can feel things going on now!
It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.
A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.
Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.
So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.
I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!
As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!
LC
It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.
A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.
Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.
So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.
I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!
As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!
LC
Tuesday, March 2, 2010
BEAT UP...BUT HAPPY!
Picking up speed but still on the BUNNY HILL
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
Sunday, February 7, 2010
SOME UPBEAT NEWS!
A 50mg tablet of prednisone compared to 10mg
My one hand contains 25 x 50mg pills that I down in one sitting
This is why I need a jug of chocolate milk to get them all down,you can't imagine how awful this drug tastes!
I finally started my prednisone prescription on Friday, turned out to be a long and difficult day at times but finished off great. The MS clinic always wants a urine test done before starting on the dose of steroids to check for infections. Sometimes an infection can mimic signs of an MS attack so they don’t want to pump you up on steroids when it could just be an infection. I had the clinic fax the prescription to my pharmacy and the requisition to the lab which happens to be located in the Strathmore Hospital and very close to my house. That’s one good thing about living here, you never see a traffic jam and seldom is anything that busy that you have to wait, except for H1N1 vaccination lines.
I went to Tim’s for my large double-double then returned home for about 45 minutes thinking I would plan out the timing of my pee just right. On any other day this probably would have been the case but of course not the day I’m going for a urine test. There were only about four people in emergency; this is definitely the place to go if you need to see a doctor. There is absolutely no comparison to the emergency rooms in Calgary, you can wait for hours upon hours but Strathmore isn’t usually busy. So the lab wasn’t busy either and I got my pee jar right away, only wished I could have peed right away. My bladder always seems to play mind games with me, it’s so disobedient! It really sucks to not be able to urinate when I want to and in some cases when I really need to. Anyway after almost an hour of scooting around the emergency room trying to find any magazine other than Woman’s Digest or boring hospital and medical brochures, I eventually had to go.
So a little off schedule now, the rest of my day began. I grabbed a quick bite and headed into the city to complete a few errands and pickup my prednisone and a jug of chocolate milk which of course took much longer than expected. It was my weekend with the kids so after downing my steroids I was off to Airdrie to pick up my children. Then I had to drive all the way back down to the southeast to Douglasdale where friends were going to watch the kids while I went skiing. I had enough time to sit down for a bowl of soup, get changed into my ski clothing and take off again to Canada Olympic Park. I arrived at the hill in time to register and hit the slopes by 7:00, the type of non stop day that really plays me out! I was completely beat by the time I was leaving Douglasdale and the last thing I wanted to do was go for another long drive so that I could exert a bunch more energy that I didn’t have left in the tank! Like I’ve stated before, I wanted to take the easy way out and bail on my evening but had to force myself to keep moving.
Once I was outside in the fresh air and strapped into my sit-ski I was feeling much better. At the end of last week’s lesson I said I had the fundamental skills down so this lesson was more or less about practice. The sit-ski supervisor is not disabled at all but he rides a sit-ski and last week demonstrated what he referred to as the extreme example of control. I was able to duplicate his example of a completely controlled run on my first try which completely surprised me but blew my instructors away. When I got to the bottom she said, “What happened to you during the last week? That was perfect!” My other instructor went to find the supervisor to watch the second run and when I was at the bottom the supervisor told her that was it, I was ready to go to the top! Totally unexpected but totally cool, my first chairlift ride in over 18 years! It was a very different experience loading onto the chair while strapped into my sit-ski. I had a volunteer on either side of me so when the chair came around they could help me lift my seat high enough for the chair to slide under and up I went. Getting off was easier because I just pushed down the ramp and away I went. Talk about a totally different view and experience looking down from the top of the hill.
So away I went skiing down from the top a little intimidated but excited feeling totally invigorated and unaware of the MS symptoms that had been affecting me earlier. My first run from the top was pretty scary, it’s a complete mind freak because I was on a slope not much steeper than the hill I had been practicing on but finding that same control wasn’t as easy. There were a few times that I’d begin picking up a lot of speed and not feeling much control. With so many other snow boarders and skiers sharing the hill I was worried about running someone down! I took a few pretty good tumbles, thank God for my helmet. Anyway I was skiing and you can’t imaging the thrill and burst of energy that I was feeling! I was thinking I could attribute some or my performance and energy to the steroids but who knows. It was a very long day for me but finished up on an awesome note.
I’ve included some photos to help explain what my steroid use is about. The big tablets contain 50mg of Prednisone and I take 25 pills in the morning every second day for five doses. This is an extremely high dose and again freaked out the pharmacist when I filled it. I haven’t needed steroids since early 2007 but I’m not new to this regiment by any means. I’ve probably been on this dose at least 15 times over the years. The drug is meant to reduce the inflammation in my brain and an immunosuppressant in order to tame down my bodies immune response and reduce or alleviate the symptoms brought on by my attack. I have always tolerated the drug well and usually see improvements within 3 to 5 days however they have been most effective when I’ve experienced an acute and very disabling attack. My current situation is more of a smouldering progression that seems to slowly build which is why I’m less confident in the success of steroid use this time around but like I said, I needed to try something.
Since I’ve been on high dose Prednisone so many times it doesn’t faze me but the reference to high dose is an extreme understatement. Out of curiosity I recently did some research on Prednisone uses, dosages and side effects. I’ve always been aware of the side effects but had a bit of an eye opener in what I’ve just learned. First of all, there are many different conditions where Prednisone is used like severe allergies, AIDS, cancer, arthritis and the list goes on and on. I was shocked when reviewing the dosage for this long list of ailments, nothing even came close to the high dosage I’m taking. The majority of uses called for 30mg to 60mg per day, the highest dosage I could find was 180mg per day. My prescription is way off the map; in fact the curve is so steep it’s like shooting off into space on a rocket ship! I’m taking 1,250mg per day all at one time, no wonder pharmacists always flip out.
The list of possible side effects is huge, far bigger than I was previously aware of even though I knew of some very serious possibilities. The list goes on and on with problems like confusion, hallucinations, mood swings (sudden and wide), abdominal pain, osteoporosis, eye pain, irregular heartbeat, muscle pain and cramps, trouble sleeping, it is huge! I’ve always tolerated the drug very well and haven’t had any serious issues but I’m sure you can now understand why I try to avoid high dose Prednisone use. I’ve only been on two doses so far and I can notice some improvement in my energy and my legs so hopefully this will continue with my final three doses.
I really wish I could undergo the Liberation procedure because Zamboni found that when the treatment was performed in an acute MS attack, all symptoms went away within 4 hours to 4 days! Sounds a lot more effective than steroid use to me. The MS world has been anxiously awaiting the first results from the Buffalo study due to be released by mid February. In the meantime Dr. Zivadinov who is the director of the Buffalo Neuroimaging Center has issued a preliminary press release which is very encouraging. They firmly believe that testing Zamboni’s theory will result in ground breaking discoveries in the field of MS. They are in the process of finalizing the second phase of the study which will include an additional 500 participants and use a new Doppler machine developed specifically for CCSVI. Dr. Zivadinov states that “this particular research is having an impact like no other we have known.” They have further announced that the center will begin to offer CCSVI Diagnostic Venous Testing beginning in mid-February 2010. They will be the first Center in North America to use such a machine, and will begin to provide training for other Centers that have expressed an interest in mastering the art of CCSVI diagnosis. An additional announcement from the press release states: the Buffalo Center BNAC-JNI has also taken the first step towards treatment of CCSVI. Together with world experts in vascular surgery from the Department of Neurosurgery at the University of Buffalo, we will soon begin the Controlled Randomized Endovascular Therapy (CRET) study for CCSVI. This will be a 6-month study that will evaluate the safety and preliminary efficacy of therapeutic angioplasty, and will include 30 patients with MS.
Hopefully we will see Canadian centers jump on board in similar fashion but this will be unlikely without applying pressure. We have a very determined and vocal MS community that has developed around CCSVI, now we must organize our voice and demand action! I’m sure ideas will spring into life once the Buffalo test results are released in mid-February but for now this is very positive news in our quest to stop this terrible disease.
LC
My one hand contains 25 x 50mg pills that I down in one sitting
This is why I need a jug of chocolate milk to get them all down,you can't imagine how awful this drug tastes!
I finally started my prednisone prescription on Friday, turned out to be a long and difficult day at times but finished off great. The MS clinic always wants a urine test done before starting on the dose of steroids to check for infections. Sometimes an infection can mimic signs of an MS attack so they don’t want to pump you up on steroids when it could just be an infection. I had the clinic fax the prescription to my pharmacy and the requisition to the lab which happens to be located in the Strathmore Hospital and very close to my house. That’s one good thing about living here, you never see a traffic jam and seldom is anything that busy that you have to wait, except for H1N1 vaccination lines.
I went to Tim’s for my large double-double then returned home for about 45 minutes thinking I would plan out the timing of my pee just right. On any other day this probably would have been the case but of course not the day I’m going for a urine test. There were only about four people in emergency; this is definitely the place to go if you need to see a doctor. There is absolutely no comparison to the emergency rooms in Calgary, you can wait for hours upon hours but Strathmore isn’t usually busy. So the lab wasn’t busy either and I got my pee jar right away, only wished I could have peed right away. My bladder always seems to play mind games with me, it’s so disobedient! It really sucks to not be able to urinate when I want to and in some cases when I really need to. Anyway after almost an hour of scooting around the emergency room trying to find any magazine other than Woman’s Digest or boring hospital and medical brochures, I eventually had to go.
So a little off schedule now, the rest of my day began. I grabbed a quick bite and headed into the city to complete a few errands and pickup my prednisone and a jug of chocolate milk which of course took much longer than expected. It was my weekend with the kids so after downing my steroids I was off to Airdrie to pick up my children. Then I had to drive all the way back down to the southeast to Douglasdale where friends were going to watch the kids while I went skiing. I had enough time to sit down for a bowl of soup, get changed into my ski clothing and take off again to Canada Olympic Park. I arrived at the hill in time to register and hit the slopes by 7:00, the type of non stop day that really plays me out! I was completely beat by the time I was leaving Douglasdale and the last thing I wanted to do was go for another long drive so that I could exert a bunch more energy that I didn’t have left in the tank! Like I’ve stated before, I wanted to take the easy way out and bail on my evening but had to force myself to keep moving.
Once I was outside in the fresh air and strapped into my sit-ski I was feeling much better. At the end of last week’s lesson I said I had the fundamental skills down so this lesson was more or less about practice. The sit-ski supervisor is not disabled at all but he rides a sit-ski and last week demonstrated what he referred to as the extreme example of control. I was able to duplicate his example of a completely controlled run on my first try which completely surprised me but blew my instructors away. When I got to the bottom she said, “What happened to you during the last week? That was perfect!” My other instructor went to find the supervisor to watch the second run and when I was at the bottom the supervisor told her that was it, I was ready to go to the top! Totally unexpected but totally cool, my first chairlift ride in over 18 years! It was a very different experience loading onto the chair while strapped into my sit-ski. I had a volunteer on either side of me so when the chair came around they could help me lift my seat high enough for the chair to slide under and up I went. Getting off was easier because I just pushed down the ramp and away I went. Talk about a totally different view and experience looking down from the top of the hill.
So away I went skiing down from the top a little intimidated but excited feeling totally invigorated and unaware of the MS symptoms that had been affecting me earlier. My first run from the top was pretty scary, it’s a complete mind freak because I was on a slope not much steeper than the hill I had been practicing on but finding that same control wasn’t as easy. There were a few times that I’d begin picking up a lot of speed and not feeling much control. With so many other snow boarders and skiers sharing the hill I was worried about running someone down! I took a few pretty good tumbles, thank God for my helmet. Anyway I was skiing and you can’t imaging the thrill and burst of energy that I was feeling! I was thinking I could attribute some or my performance and energy to the steroids but who knows. It was a very long day for me but finished up on an awesome note.
I’ve included some photos to help explain what my steroid use is about. The big tablets contain 50mg of Prednisone and I take 25 pills in the morning every second day for five doses. This is an extremely high dose and again freaked out the pharmacist when I filled it. I haven’t needed steroids since early 2007 but I’m not new to this regiment by any means. I’ve probably been on this dose at least 15 times over the years. The drug is meant to reduce the inflammation in my brain and an immunosuppressant in order to tame down my bodies immune response and reduce or alleviate the symptoms brought on by my attack. I have always tolerated the drug well and usually see improvements within 3 to 5 days however they have been most effective when I’ve experienced an acute and very disabling attack. My current situation is more of a smouldering progression that seems to slowly build which is why I’m less confident in the success of steroid use this time around but like I said, I needed to try something.
Since I’ve been on high dose Prednisone so many times it doesn’t faze me but the reference to high dose is an extreme understatement. Out of curiosity I recently did some research on Prednisone uses, dosages and side effects. I’ve always been aware of the side effects but had a bit of an eye opener in what I’ve just learned. First of all, there are many different conditions where Prednisone is used like severe allergies, AIDS, cancer, arthritis and the list goes on and on. I was shocked when reviewing the dosage for this long list of ailments, nothing even came close to the high dosage I’m taking. The majority of uses called for 30mg to 60mg per day, the highest dosage I could find was 180mg per day. My prescription is way off the map; in fact the curve is so steep it’s like shooting off into space on a rocket ship! I’m taking 1,250mg per day all at one time, no wonder pharmacists always flip out.
The list of possible side effects is huge, far bigger than I was previously aware of even though I knew of some very serious possibilities. The list goes on and on with problems like confusion, hallucinations, mood swings (sudden and wide), abdominal pain, osteoporosis, eye pain, irregular heartbeat, muscle pain and cramps, trouble sleeping, it is huge! I’ve always tolerated the drug very well and haven’t had any serious issues but I’m sure you can now understand why I try to avoid high dose Prednisone use. I’ve only been on two doses so far and I can notice some improvement in my energy and my legs so hopefully this will continue with my final three doses.
I really wish I could undergo the Liberation procedure because Zamboni found that when the treatment was performed in an acute MS attack, all symptoms went away within 4 hours to 4 days! Sounds a lot more effective than steroid use to me. The MS world has been anxiously awaiting the first results from the Buffalo study due to be released by mid February. In the meantime Dr. Zivadinov who is the director of the Buffalo Neuroimaging Center has issued a preliminary press release which is very encouraging. They firmly believe that testing Zamboni’s theory will result in ground breaking discoveries in the field of MS. They are in the process of finalizing the second phase of the study which will include an additional 500 participants and use a new Doppler machine developed specifically for CCSVI. Dr. Zivadinov states that “this particular research is having an impact like no other we have known.” They have further announced that the center will begin to offer CCSVI Diagnostic Venous Testing beginning in mid-February 2010. They will be the first Center in North America to use such a machine, and will begin to provide training for other Centers that have expressed an interest in mastering the art of CCSVI diagnosis. An additional announcement from the press release states: the Buffalo Center BNAC-JNI has also taken the first step towards treatment of CCSVI. Together with world experts in vascular surgery from the Department of Neurosurgery at the University of Buffalo, we will soon begin the Controlled Randomized Endovascular Therapy (CRET) study for CCSVI. This will be a 6-month study that will evaluate the safety and preliminary efficacy of therapeutic angioplasty, and will include 30 patients with MS.
Hopefully we will see Canadian centers jump on board in similar fashion but this will be unlikely without applying pressure. We have a very determined and vocal MS community that has developed around CCSVI, now we must organize our voice and demand action! I’m sure ideas will spring into life once the Buffalo test results are released in mid-February but for now this is very positive news in our quest to stop this terrible disease.
LC
Thursday, February 4, 2010
IT AINT EASY!
Well it’s been three weeks since my last blog but unfortunately things have not settled and my condition continues to worsen. The decline is on a very slow scale but I definitely notice it. Others would probably not see this but they can only look from the outside and can’t feel what is going on inside. After monitoring what has been happening recently, I have reluctantly made the call to the MS clinic to get the prednisone prescription. I am still not confident that the steroids will be effective but it’s time to try something. Obviously, people can’t see what is happening to my eyes but they have gotten worse. The odd thing is that they don’t stay bad and can recover somewhat with rest. As I’m writing this my eyes feel pretty good and there is limited blur but the question is how long before that changes. The pain and vision problems increase exponentially by the end of the day causing particular difficulty in the dark. When I’m feeling worn out or my eyes are tired it’s difficult to read and in some cases not possible at all. For example, I was cooking dinner last week and trying to read the label from a jar and could not focus clearly enough to make out anything. Granted the print was relatively small but everything was just a blur, even when I tried with just my right eye. By the next morning it was better, still not good but improved. When my vision becomes blurred, it makes walking harder because I actually become dizzy. This is weird because I did not expect this outcome from hazy eyesight but it ties in with additional challenges, most notably my legs.
I have slowed up considerably and at times become quite unstable. This is likely not obvious to other people but it’s a big deal to me. I am always very slow when hobbling around with my cane so a further slowdown might not be noticeable but every movement I make is becoming more difficult. For starters, my balance has really deteriorated so I have to be careful where I stand and walk. I don’t hang around the top of a staircase or walk confidently through a liquor store. The chance of losing my balance and falling into a shelf stocked with wine and taking the whole thing down is a frightening possibility! I often lose my balance at home and have to fall back into a chair or rely on a wall to keep me up but in public, I have to be more careful. I liken it to a toddler learning to walk, there is a sense of uncertainty with each step and he’s not really sure if his leg will buckle with his next stride. My legs are weaker and just won’t move as easily as they did even one month ago which means it requires additional effort to do anything so I tire and get fatigued quicker. My feet usually drag across the floor because I cannot bend my knees to pick them up without a concentrated effort and I am feeling more spasticity in my legs. Given these circumstances, it is much harder for me to do most things although I’m sure no one else realizes this.
These are just some specific examples of functional decline that I’ve been faced with but there are so many more issues that I must deal with every day. I have always had bladder problems but bowel movements have become extremely troublesome. My lack of energy is increasingly noticeable and requires more personal motivation and drive in order to get out there and get things done. It’s very easy to become lazy when you feel dead all the time. For instance, I had a Tupperware container to return to my neighbour that sat in my laundry room for three weeks because I just did not have the energy or will to walk next door. I actually avoid having to walk every chance I can, I’m the king of drive thru service. From fast food restaurants and of course Tim’s to banking, oil changes and the carwash, if I can’t roll down my window and do it from my driver’s seat then I just don’t feel like doing it. Unfortunately there is not always an easy way out of things that must be done like taking my son to hockey or my daughter to gymnastics. Not that I want to get out of these tasks because I truly cherish the involvement I play in my children’s lives but sometimes it’s just hard.
I’ve been thinking about trying the steroids for a few days now but finally made the decision last night. I took Dylan to hockey practice last night and for the first time in the five years he’s played; I stayed in the concession foyer to watch through the glass. I was feeling beat and even though I was on my scooter, I didn’t feel like getting off in order to climb onto and navigate my way through the bleachers, it just seemed like too big an effort. At that point, I realized the negative impact this attack was having on me and that I needed to do what I can to provide some relief. I can almost guarantee that anyone who knows me had no idea how poorly I was feeling and I purposely try to hide any difficulties I’m having to the rest of the world, even those closest to me. I have always been this way because I do not want to talk about or display any negative feelings and I don’t want to complain or have anyone feeling sorry for me. I’ll deal with the psychoanalysis later but this strategy has backfired on me in the past.
I suppose it leads to isolation and loneliness but I’ve been dealing with my problems alone for so long that it’s all I know. Sometimes I do let it get to me but after all, I’m only human and perhaps not as strong as I’d like to believe. It is hard to be alone when you’re not feeling well, it would be nice to lie down with a sympathetic and compassionate ear, enjoy some hugs and feel loved. But alas I do not have this and it’s easy to fall into the woe is me mindset. I cannot dwell on this fact because it would just lead to depression and there is nothing I can do about it right now. Well I do get the love and hugs from my children but it’s not the same so it still feels like there is something or someone missing. Fortunately, I have God to fall back on and lift me out of self-pity. He is the one constant in my life, I know He loves me and will never leave me. He does not change; He is the same yesterday, today and forever. We have been going through the book of James in church and it has been a real encouragement. The initial message is that we will all face trials and tribulation but we are to count it all as joy. Sounds easier said than done right?
After hearing the disappointing news at my last appointment, I could have been overcome with sorrow and discouragement but I wasn’t at all because I had faith to lift me above that. Now that I’m feeling this attack progress, it becomes more difficult to stay positive but there is no other alternative for me. I could become angry, discouraged and depressed but I know that will only make things worse. I do not know if I’m on a path to further progression and disabilities but I won’t let that possible outcome beat me down; that is the power of faith. I believe that everything is in the Lord’s hands and trust in his plan for me. When we are faced with challenges and “bad stuff” we can’t let it consume us, find the joy in it. I am still confident that I’ll find relief from this terrible disease and thankful that I have so many blessings. I could be completely debilitated and stuck in a wheelchair for the rest of my life like many people are, but I’m still mobile and independent. I can still drive and enjoy many aspects of life that might not be possible if I was stuck in a long-term care facility. Everyone has their own story, some more difficult than others but we must remember that things can always be worse so be happy and thankful for what you have today.
It is so important for me to remain active and enjoy life. I stay involved in many social activities like church, interactions and friendships that are built with other hockey parents, I take ski lessons every Friday evening and try to meet up with friends at least once a week. Sometimes I just don’t feel the energy to take part in some activities but I force myself. I have to take joy in what I can today because I might not be able to do it tomorrow! For example, I was very worried that I wouldn’t be able to ski because my balance has been so poor but I had to try. Since I use a sit-ski, I’m not on my feet but I have my butt strapped into a bucket seat and fortunately my balance isn’t affected while in a sitting position. I’m happy to report that I’m doing quite well; I hope to get off the bunny hill and up the mountain this week. I have most of the fundamentals mastered, now it’s just practice.
So what’s next for my treatment options? Well assuming everything is still cool with the MS clinic, I’ll start on prednisone before the end of the week. Since it is unusual for me to have an attack, I am hopeful that it will be followed up by remission and that the problems I’m having will be temporary rather than a sustained progression in the disease but only time will tell. I am still extremely eager to be tested for CCSVI but have recently been informed by two private diagnostic centers that they are not doing any testing and there is nothing planned for the immediate future. It is now so important to get the study results from Buffalo; if they come in positive, I’m confident that testing will become a lot more accessible. I have also contacted the False Creek clinic and they can now do the MRV testing using the proper protocol but they won’t have the Doppler ultrasound procedure in place until sometime in March. There is not as of yet any plans for treatment but I’m hopeful that it won’t be too far off.
There remains a ton of scepticism among most of the medical establishment but there are some bright spots coming forward from open-minded doctors. I have been informed that there is one local doctor moving forward with testing and has found blocked veins in all MS patients he’s tested. Apparently, he has the personal financial ability to proceed with investigating CCSVI without waiting for funding decisions from the MS Society or similar organizations. When I learn more about this doctor, I will post the information on my blog. I’m also investigating the possibility of a foreign clinic being established that will do the testing and the Liberation procedure. It’s too preliminary to get into any details now but plans should come together within the next couple of months. I still think that it will likely take years for testing and treatment options to become available in Canada but us MS’ers must maintain the pressure on doctors, government, MS societies and clinics. Our hope is still strong and positive developments will occur if we remain vigilant and determined.
The problem remains with patience. For those of us suffering the devastating and disabling consequences of this disease, time is of the essence! Irreversible damage is occurring every day and many of us simply don’t have the time to sit back and wait for clinical trial results and further studies. I know that for me the urgency has increased significantly since learning of my recent progression and new disease activity. I know how fast things can develop with MS and as the inevitable downward spiral continues, my desperation grows. I don’t know how everything will end up but my time horizon to be tested and correct the blockages that I know they’ll find is within six months. Most people might think this to be too optimistic but I’m determined to push forward and take control of my own health. There is no way I am going to wait for the Canadian medical system to provide any hope or relief for me; I’ll search for and find it myself! I live a very difficult existence that most people can’t recognize or appreciate but I remain committed to living with a positive attitude. As I say every night and to end this blog...Praise God!
LC
I have slowed up considerably and at times become quite unstable. This is likely not obvious to other people but it’s a big deal to me. I am always very slow when hobbling around with my cane so a further slowdown might not be noticeable but every movement I make is becoming more difficult. For starters, my balance has really deteriorated so I have to be careful where I stand and walk. I don’t hang around the top of a staircase or walk confidently through a liquor store. The chance of losing my balance and falling into a shelf stocked with wine and taking the whole thing down is a frightening possibility! I often lose my balance at home and have to fall back into a chair or rely on a wall to keep me up but in public, I have to be more careful. I liken it to a toddler learning to walk, there is a sense of uncertainty with each step and he’s not really sure if his leg will buckle with his next stride. My legs are weaker and just won’t move as easily as they did even one month ago which means it requires additional effort to do anything so I tire and get fatigued quicker. My feet usually drag across the floor because I cannot bend my knees to pick them up without a concentrated effort and I am feeling more spasticity in my legs. Given these circumstances, it is much harder for me to do most things although I’m sure no one else realizes this.
These are just some specific examples of functional decline that I’ve been faced with but there are so many more issues that I must deal with every day. I have always had bladder problems but bowel movements have become extremely troublesome. My lack of energy is increasingly noticeable and requires more personal motivation and drive in order to get out there and get things done. It’s very easy to become lazy when you feel dead all the time. For instance, I had a Tupperware container to return to my neighbour that sat in my laundry room for three weeks because I just did not have the energy or will to walk next door. I actually avoid having to walk every chance I can, I’m the king of drive thru service. From fast food restaurants and of course Tim’s to banking, oil changes and the carwash, if I can’t roll down my window and do it from my driver’s seat then I just don’t feel like doing it. Unfortunately there is not always an easy way out of things that must be done like taking my son to hockey or my daughter to gymnastics. Not that I want to get out of these tasks because I truly cherish the involvement I play in my children’s lives but sometimes it’s just hard.
I’ve been thinking about trying the steroids for a few days now but finally made the decision last night. I took Dylan to hockey practice last night and for the first time in the five years he’s played; I stayed in the concession foyer to watch through the glass. I was feeling beat and even though I was on my scooter, I didn’t feel like getting off in order to climb onto and navigate my way through the bleachers, it just seemed like too big an effort. At that point, I realized the negative impact this attack was having on me and that I needed to do what I can to provide some relief. I can almost guarantee that anyone who knows me had no idea how poorly I was feeling and I purposely try to hide any difficulties I’m having to the rest of the world, even those closest to me. I have always been this way because I do not want to talk about or display any negative feelings and I don’t want to complain or have anyone feeling sorry for me. I’ll deal with the psychoanalysis later but this strategy has backfired on me in the past.
I suppose it leads to isolation and loneliness but I’ve been dealing with my problems alone for so long that it’s all I know. Sometimes I do let it get to me but after all, I’m only human and perhaps not as strong as I’d like to believe. It is hard to be alone when you’re not feeling well, it would be nice to lie down with a sympathetic and compassionate ear, enjoy some hugs and feel loved. But alas I do not have this and it’s easy to fall into the woe is me mindset. I cannot dwell on this fact because it would just lead to depression and there is nothing I can do about it right now. Well I do get the love and hugs from my children but it’s not the same so it still feels like there is something or someone missing. Fortunately, I have God to fall back on and lift me out of self-pity. He is the one constant in my life, I know He loves me and will never leave me. He does not change; He is the same yesterday, today and forever. We have been going through the book of James in church and it has been a real encouragement. The initial message is that we will all face trials and tribulation but we are to count it all as joy. Sounds easier said than done right?
After hearing the disappointing news at my last appointment, I could have been overcome with sorrow and discouragement but I wasn’t at all because I had faith to lift me above that. Now that I’m feeling this attack progress, it becomes more difficult to stay positive but there is no other alternative for me. I could become angry, discouraged and depressed but I know that will only make things worse. I do not know if I’m on a path to further progression and disabilities but I won’t let that possible outcome beat me down; that is the power of faith. I believe that everything is in the Lord’s hands and trust in his plan for me. When we are faced with challenges and “bad stuff” we can’t let it consume us, find the joy in it. I am still confident that I’ll find relief from this terrible disease and thankful that I have so many blessings. I could be completely debilitated and stuck in a wheelchair for the rest of my life like many people are, but I’m still mobile and independent. I can still drive and enjoy many aspects of life that might not be possible if I was stuck in a long-term care facility. Everyone has their own story, some more difficult than others but we must remember that things can always be worse so be happy and thankful for what you have today.
It is so important for me to remain active and enjoy life. I stay involved in many social activities like church, interactions and friendships that are built with other hockey parents, I take ski lessons every Friday evening and try to meet up with friends at least once a week. Sometimes I just don’t feel the energy to take part in some activities but I force myself. I have to take joy in what I can today because I might not be able to do it tomorrow! For example, I was very worried that I wouldn’t be able to ski because my balance has been so poor but I had to try. Since I use a sit-ski, I’m not on my feet but I have my butt strapped into a bucket seat and fortunately my balance isn’t affected while in a sitting position. I’m happy to report that I’m doing quite well; I hope to get off the bunny hill and up the mountain this week. I have most of the fundamentals mastered, now it’s just practice.
So what’s next for my treatment options? Well assuming everything is still cool with the MS clinic, I’ll start on prednisone before the end of the week. Since it is unusual for me to have an attack, I am hopeful that it will be followed up by remission and that the problems I’m having will be temporary rather than a sustained progression in the disease but only time will tell. I am still extremely eager to be tested for CCSVI but have recently been informed by two private diagnostic centers that they are not doing any testing and there is nothing planned for the immediate future. It is now so important to get the study results from Buffalo; if they come in positive, I’m confident that testing will become a lot more accessible. I have also contacted the False Creek clinic and they can now do the MRV testing using the proper protocol but they won’t have the Doppler ultrasound procedure in place until sometime in March. There is not as of yet any plans for treatment but I’m hopeful that it won’t be too far off.
There remains a ton of scepticism among most of the medical establishment but there are some bright spots coming forward from open-minded doctors. I have been informed that there is one local doctor moving forward with testing and has found blocked veins in all MS patients he’s tested. Apparently, he has the personal financial ability to proceed with investigating CCSVI without waiting for funding decisions from the MS Society or similar organizations. When I learn more about this doctor, I will post the information on my blog. I’m also investigating the possibility of a foreign clinic being established that will do the testing and the Liberation procedure. It’s too preliminary to get into any details now but plans should come together within the next couple of months. I still think that it will likely take years for testing and treatment options to become available in Canada but us MS’ers must maintain the pressure on doctors, government, MS societies and clinics. Our hope is still strong and positive developments will occur if we remain vigilant and determined.
The problem remains with patience. For those of us suffering the devastating and disabling consequences of this disease, time is of the essence! Irreversible damage is occurring every day and many of us simply don’t have the time to sit back and wait for clinical trial results and further studies. I know that for me the urgency has increased significantly since learning of my recent progression and new disease activity. I know how fast things can develop with MS and as the inevitable downward spiral continues, my desperation grows. I don’t know how everything will end up but my time horizon to be tested and correct the blockages that I know they’ll find is within six months. Most people might think this to be too optimistic but I’m determined to push forward and take control of my own health. There is no way I am going to wait for the Canadian medical system to provide any hope or relief for me; I’ll search for and find it myself! I live a very difficult existence that most people can’t recognize or appreciate but I remain committed to living with a positive attitude. As I say every night and to end this blog...Praise God!
LC
Thursday, January 14, 2010
HERE IT GOES AGAIN!
I saw my neurologist last week and had a very interesting chat. I happened to be his last appointment of the day and was able to spend over an hour and a half talking, much of it regarding CCSVI. My doctor knows I'm very resourceful and determined, so he knew I would be on him to get tested and as expected I knew this would not happen at this time. Not that he would refuse my request, but he explained that he did not know where to send me or what to do. Before my appointment I did my own reconnaissance and visited both the ultra sound clinic and MRI department. I had a copy of the ultra sound protocol and the diagnostic requests for the MRI technician.
To begin with, the ultra sound department did confirm that they could do the test but they would still need specific instructions from my neurologist. I was told that they had not had any direct requisitions relating to CCSVI but that they perform very similar procedures for stroke victims. The MRI department had the same story; they could complete the required scans but again needed a specific requisition from my neuro. The requirements and protocols for these tests exist but are not readily available so my doctor would not know what to order. If he was confident that the protocols were clearly understood then he would order the tests but to his knowledge nothing is clearly understood yet. I told him that I agreed that until there was a clearly defined and accepted protocol, I could wait for the tests. He is fully aware that MS patients are putting pressure on their GP’s to get tested and so tests are being ordered mostly through private clinics but in the end they are coming back useless. We don’t have technicians properly trained to identify stenosis in the veins so there is no consistent data coming back. Even if blockages were found, what then, how and where do you go to correct the problem? We’re just not there yet and my doctor believes it will be some time before we get there.
According to what my neurologist has learned from his colleagues in London Ont. who are working on CCSVI studies, we do not know what we’re doing. Apparently, they have not been able to duplicate Dr. Zamboni’s results. Whereas Zamboni found blockages in all of his MS patients, the London centre has not found any! Now this is second hand information and I haven’t seen any actual study results but it is enough to warrant caution moving forward on the part of doctors. Until we have clear results that Zamboni’s findings can be replicated nothing will move fast and if in fact we can’t duplicate his results, the studies that are planned will lose traction rapidly. My doctor was also informed that when Dr. Haacke’s protocol for the MRV was given to the technician, he said that to follow the protocol would mean up to four hours in the MRI scanner which was instantly a non starter. Now all of this seems contradictory to what I’ve heard but it’s enough to prevent further study in Calgary and likely anywhere in Alberta. As my neuro explained there is a limited amount of resources and since there is a study proposed, not confirmed yet, at UBC and one in Saskatoon, it would be pointless to run the same study here in Alberta. Until we see positive results from these studies, nothing will happen here and if we don’t see positive results, the investigations will end quickly.
My doctor had Zamboni’s study on his desk so he was very familiar with his results and pointed out some interesting facts. When I told him that Zamboni had been stopped from performing the procedure in Italy and instead were beginning a proper trial, he concluded that this is exactly what Zamboni wanted. My neuro found many problems with the Italian study results and methodology. He feels that this study would not even be close to being accepted as a legitimate trial here and Zamboni admits many of the shortcomings in his conclusions and is likely happy to be starting a proper clinical trial. The study results showed very little if any difference in relapse rates between those who underwent the procedure and those who didn’t. It was also not discussed that his patients were all on immunomodulating therapy (MS drugs) before the procedure and they all stayed on the drug after the treatment. Given this fact, it is hard to make concrete conclusions about the overall effectiveness and this is another reason why proper clinical studies need to be completed.
In the end, my neurologist is not against anything with CCSVI but wants to see evidence replicating Dr. Zamboni’s findings through properly controlled clinical trials. I can’t really disagree with him but I also can’t accept the time frames that typically go with this type of investigation. The MS community will not wait years to see test results but I do believe there is work to be done in order for everyone to get on the same page so we’re not performing useless tests. Proper training of technicians and a standard accepted protocol for testing needs to be adopted. I think we’re on the road to getting there but still lack consistency and agreement on how to achieve accepted test results. Once I am confident that an ultrasound or MRI facility is up to speed with the proper protocol, I will get tested and my neurologist will order the tests. His cautious approach should not be mistaken as a dismissal of the merits of Zamboni’s work. He will support my decision just as he did with my decision to have stem cell transplants in China. He is quite choked with all the rhetoric and conspiracy theories being promoted across the internet. His point is that he’s dedicated his career to MS and people suffering with this disease and to be accused of stonewalling progress, trying to protect his job or funding is like a kick in the teeth! I can pretty much guarantee that this is happening but it’s not fair to group all neurologists together under this evil umbrella of deceit, there are good doctors out there!
The reason for my visit to my neurologist was to review my last MRI from December. Our conversation turned down somewhat when we finally got to my current situation. I was explaining the difficulties I’ve been experiencing the last month or so and he wasn’t surprised, in fact almost expectant of my problems. My energy levels have been very low and I can’t seem to get motivated to get anything done. As I explained at the end of my last blog in December, there are many areas that have become problematic. Given the up and down nature of my symptoms I attributed these problems to a down cycle and thought I’d bounce back. This hasn’t happened yet and now I know why, I have three new lesions on my brain. Since my last MRI in the fall of 2007 up until now, there has been disease activity but we don’t know when this occurred. I have two smaller lesions about 3 mm and one larger that is about 1 cm located on my left temporal lobe. There is a span of more than two years when these could have developed but at this point we have no way of knowing when. Were there any lesions before I went to China or did they develop 6 months or a year after my stem cell transplants?....we just don’t know. What we do know is that there is inflammation and disease activity occurring right now.
This was disappointing news of course because I was still feeling positive about the progression of the disease and the lasting effects that I attributed to my treatment in China. So what does this all mean? To begin with, I still have no regrets about going to China. I really did feel better in the first year since my return and yes, I definitely had improvements. As I’ve explained throughout my blog, most improvements had faded away but I could still do things that were not possible before. Sure, this could be attributed to the placebo effect but I doubt it considering the timing and duration of my different improvements. Either way it doesn’t really matter, the point is that I have new disease activity happening. So what to do?
As usual, my neurologist doesn’t know what to do and leaves that decision up to me. There are not many options to consider and he knows that I am very knowledgeable about all treatment alternatives. As I’ve stated before, I’m really the only one that knows what’s happening with my body and ultimately the best judge of what to do. He offered to start me on a dose of steroids but I declined for the moment. I’d rather monitor how things progress or don’t before opting for the steroids. I’ve taken steroids in the past when I was experiencing similar symptoms and not seen any improvement. What I’m concerned with is my left eye, if I notice any more deterioration in the next few days to week I will take the steroids. It’s been sore, well both eyes have been sore forever it seems but my vision is now being affected. I’m sure that if I can focus on something my vision would still be 20/20 or close to. The problem is the blurriness that forms around the outer edge of my focus and it seems like someone has just applied a film over my eyeball. It’s manageable right now but if it gets worse, I’ll have to try the steroids. I can deal with all of my other issues as I always have as long as things remain somewhat stable without any rapid progression.
The next issue to deal with is deciding whether to go back on an MS drug. We know that none of the drugs have proven to be effective for secondary progressive MS and there is not any approved treatment. As my neurologist says, I puzzle him. Not that it’s unheard of to have attacks with secondary progressive but it is very uncommon. The first time I went off drug treatment to enter a trial I ended up suffering several attacks and after recovering as much as I could, I went on Tysabri. I remained attack free so it seemed that the drug had a positive effect and this is the first attack I’ve had. I haven’t been on an MS drug since approximately July of 2008 so hopefully I can remain stable after starting the drug again. My current exacerbation will have to be over for a few months and I’ll need another MRI before starting on Tysabri again. My doctor did offer to try a new drug but the only two I haven’t been on are Rebif and Avonex, which work under a similar mechanism to Beta Seron, which had no positive effect on me so, I’m not into experimenting with anything new. They’ve proven to not do anything for secondary progressive anyway. The fact that I’m still having attacks leads me to believe that Tysabri will be beneficial in stabilizing the disease.
I believe that the promise of Zamboni’s work is as solid as ever, it’s just a matter of time until we can prove his theory. I think initial results from the first 500 participants in the Buffalo study will be released in late January or early February. The findings from this study will be extremely important in moving forward. I don’t expect to see any results from Canadian studies for quite some time but if results from Buffalo can confirm Zamboni’s findings, the ball will definitely be rolling. I know there will be a lot of good developments coming, unfortunately, patience is required. What’s happening with my MS was very disappointing but has not brought me down at all. I am so thankful to God for sustaining my strong faith and I find comfort and peace in His word and promise. I don’t know where things will go from here but I will not allow my hope, attitude or faith to be beaten down! I will keep fighting the good fight!
LC
To begin with, the ultra sound department did confirm that they could do the test but they would still need specific instructions from my neurologist. I was told that they had not had any direct requisitions relating to CCSVI but that they perform very similar procedures for stroke victims. The MRI department had the same story; they could complete the required scans but again needed a specific requisition from my neuro. The requirements and protocols for these tests exist but are not readily available so my doctor would not know what to order. If he was confident that the protocols were clearly understood then he would order the tests but to his knowledge nothing is clearly understood yet. I told him that I agreed that until there was a clearly defined and accepted protocol, I could wait for the tests. He is fully aware that MS patients are putting pressure on their GP’s to get tested and so tests are being ordered mostly through private clinics but in the end they are coming back useless. We don’t have technicians properly trained to identify stenosis in the veins so there is no consistent data coming back. Even if blockages were found, what then, how and where do you go to correct the problem? We’re just not there yet and my doctor believes it will be some time before we get there.
According to what my neurologist has learned from his colleagues in London Ont. who are working on CCSVI studies, we do not know what we’re doing. Apparently, they have not been able to duplicate Dr. Zamboni’s results. Whereas Zamboni found blockages in all of his MS patients, the London centre has not found any! Now this is second hand information and I haven’t seen any actual study results but it is enough to warrant caution moving forward on the part of doctors. Until we have clear results that Zamboni’s findings can be replicated nothing will move fast and if in fact we can’t duplicate his results, the studies that are planned will lose traction rapidly. My doctor was also informed that when Dr. Haacke’s protocol for the MRV was given to the technician, he said that to follow the protocol would mean up to four hours in the MRI scanner which was instantly a non starter. Now all of this seems contradictory to what I’ve heard but it’s enough to prevent further study in Calgary and likely anywhere in Alberta. As my neuro explained there is a limited amount of resources and since there is a study proposed, not confirmed yet, at UBC and one in Saskatoon, it would be pointless to run the same study here in Alberta. Until we see positive results from these studies, nothing will happen here and if we don’t see positive results, the investigations will end quickly.
My doctor had Zamboni’s study on his desk so he was very familiar with his results and pointed out some interesting facts. When I told him that Zamboni had been stopped from performing the procedure in Italy and instead were beginning a proper trial, he concluded that this is exactly what Zamboni wanted. My neuro found many problems with the Italian study results and methodology. He feels that this study would not even be close to being accepted as a legitimate trial here and Zamboni admits many of the shortcomings in his conclusions and is likely happy to be starting a proper clinical trial. The study results showed very little if any difference in relapse rates between those who underwent the procedure and those who didn’t. It was also not discussed that his patients were all on immunomodulating therapy (MS drugs) before the procedure and they all stayed on the drug after the treatment. Given this fact, it is hard to make concrete conclusions about the overall effectiveness and this is another reason why proper clinical studies need to be completed.
In the end, my neurologist is not against anything with CCSVI but wants to see evidence replicating Dr. Zamboni’s findings through properly controlled clinical trials. I can’t really disagree with him but I also can’t accept the time frames that typically go with this type of investigation. The MS community will not wait years to see test results but I do believe there is work to be done in order for everyone to get on the same page so we’re not performing useless tests. Proper training of technicians and a standard accepted protocol for testing needs to be adopted. I think we’re on the road to getting there but still lack consistency and agreement on how to achieve accepted test results. Once I am confident that an ultrasound or MRI facility is up to speed with the proper protocol, I will get tested and my neurologist will order the tests. His cautious approach should not be mistaken as a dismissal of the merits of Zamboni’s work. He will support my decision just as he did with my decision to have stem cell transplants in China. He is quite choked with all the rhetoric and conspiracy theories being promoted across the internet. His point is that he’s dedicated his career to MS and people suffering with this disease and to be accused of stonewalling progress, trying to protect his job or funding is like a kick in the teeth! I can pretty much guarantee that this is happening but it’s not fair to group all neurologists together under this evil umbrella of deceit, there are good doctors out there!
The reason for my visit to my neurologist was to review my last MRI from December. Our conversation turned down somewhat when we finally got to my current situation. I was explaining the difficulties I’ve been experiencing the last month or so and he wasn’t surprised, in fact almost expectant of my problems. My energy levels have been very low and I can’t seem to get motivated to get anything done. As I explained at the end of my last blog in December, there are many areas that have become problematic. Given the up and down nature of my symptoms I attributed these problems to a down cycle and thought I’d bounce back. This hasn’t happened yet and now I know why, I have three new lesions on my brain. Since my last MRI in the fall of 2007 up until now, there has been disease activity but we don’t know when this occurred. I have two smaller lesions about 3 mm and one larger that is about 1 cm located on my left temporal lobe. There is a span of more than two years when these could have developed but at this point we have no way of knowing when. Were there any lesions before I went to China or did they develop 6 months or a year after my stem cell transplants?....we just don’t know. What we do know is that there is inflammation and disease activity occurring right now.
This was disappointing news of course because I was still feeling positive about the progression of the disease and the lasting effects that I attributed to my treatment in China. So what does this all mean? To begin with, I still have no regrets about going to China. I really did feel better in the first year since my return and yes, I definitely had improvements. As I’ve explained throughout my blog, most improvements had faded away but I could still do things that were not possible before. Sure, this could be attributed to the placebo effect but I doubt it considering the timing and duration of my different improvements. Either way it doesn’t really matter, the point is that I have new disease activity happening. So what to do?
As usual, my neurologist doesn’t know what to do and leaves that decision up to me. There are not many options to consider and he knows that I am very knowledgeable about all treatment alternatives. As I’ve stated before, I’m really the only one that knows what’s happening with my body and ultimately the best judge of what to do. He offered to start me on a dose of steroids but I declined for the moment. I’d rather monitor how things progress or don’t before opting for the steroids. I’ve taken steroids in the past when I was experiencing similar symptoms and not seen any improvement. What I’m concerned with is my left eye, if I notice any more deterioration in the next few days to week I will take the steroids. It’s been sore, well both eyes have been sore forever it seems but my vision is now being affected. I’m sure that if I can focus on something my vision would still be 20/20 or close to. The problem is the blurriness that forms around the outer edge of my focus and it seems like someone has just applied a film over my eyeball. It’s manageable right now but if it gets worse, I’ll have to try the steroids. I can deal with all of my other issues as I always have as long as things remain somewhat stable without any rapid progression.
The next issue to deal with is deciding whether to go back on an MS drug. We know that none of the drugs have proven to be effective for secondary progressive MS and there is not any approved treatment. As my neurologist says, I puzzle him. Not that it’s unheard of to have attacks with secondary progressive but it is very uncommon. The first time I went off drug treatment to enter a trial I ended up suffering several attacks and after recovering as much as I could, I went on Tysabri. I remained attack free so it seemed that the drug had a positive effect and this is the first attack I’ve had. I haven’t been on an MS drug since approximately July of 2008 so hopefully I can remain stable after starting the drug again. My current exacerbation will have to be over for a few months and I’ll need another MRI before starting on Tysabri again. My doctor did offer to try a new drug but the only two I haven’t been on are Rebif and Avonex, which work under a similar mechanism to Beta Seron, which had no positive effect on me so, I’m not into experimenting with anything new. They’ve proven to not do anything for secondary progressive anyway. The fact that I’m still having attacks leads me to believe that Tysabri will be beneficial in stabilizing the disease.
I believe that the promise of Zamboni’s work is as solid as ever, it’s just a matter of time until we can prove his theory. I think initial results from the first 500 participants in the Buffalo study will be released in late January or early February. The findings from this study will be extremely important in moving forward. I don’t expect to see any results from Canadian studies for quite some time but if results from Buffalo can confirm Zamboni’s findings, the ball will definitely be rolling. I know there will be a lot of good developments coming, unfortunately, patience is required. What’s happening with my MS was very disappointing but has not brought me down at all. I am so thankful to God for sustaining my strong faith and I find comfort and peace in His word and promise. I don’t know where things will go from here but I will not allow my hope, attitude or faith to be beaten down! I will keep fighting the good fight!
LC
Monday, December 14, 2009
PROMISING TO FRUSTRATING!!
There are some strange events happening in the MS world with regards to CCSVI, it seems that somehow the brakes have been slammed on! Something that started off with so much promise and excitement has now ground to a halt and there are certain elements of this deliberate slow down that appear to be very suspicious and disappointing. To begin with I decided to try a different number to the U of A radiology department since the previous contact number has been ignored. I found out that there is no study in the works and the information that Dr. Emery was starting a study in concert with Dr. Haacke was false from the beginning. When I contacted his office back in November they did seem kind of clued out but took my name and number so they could call me when the study was figured out. Maybe it was a mistake to include Emery in the list of participants on ms-mri.com but either way the huge amount of interest that it has generated might make you think they’d set up the study anyway…not going to happen right now.
Next I found out that Dr. Zamboni is now prevented from performing the Liberation procedure in Italy. A new study will be started but in the mean time there is a lot of pressure being put on Italian authorities and government by many MS groups to allow Zamboni to continue treating MS patients. Bottom line is that Zamboni is not currently performing the procedure. This is also a little strange because he just released his study and I didn’t see anything in it that would warrant this action????but it’s suspected to be some sort of bureaucratic problem.
Coincidentally Dr. Dake stopped performing the procedure shortly after Zamboni was stopped. All of a sudden big news was coming out that one person had died from the procedure and another very serious event had occurred. Well as it turns out the death was not as a result of the procedure but this news wasn’t nearly as important and seems to get little attention. The serious event that occurred was a stent slipping from the vein and moving into the artery. I believe the patient required open heart surgery to rectify the problem but he is recovering well. The way Stanford halted the procedure so abruptly was surprising, there were people from around the U.S. that had flown in for the treatment only to find out their procedure had been cancelled. There are a lot of angry people over this but no more procedures will be done. This could very well be a legal issue for Stanford and perhaps the reason for their abrupt stoppage but one never really knows. Dr. Dake will be starting a clinical trial in January so hopefully those people whose procedure was so unexpectedly cancelled will be first in line for his trial.
I had my MRI on Wednesday and stopped into the MS clinic to see if I could get their perspective on things. I spoke with a head nurse and as I suspected her response was cautiously negative. Of course the death and serious event had a large impact, that’s where I learned of the death. So needless to say there aren’t any studies planned around CCSVI and nothing on the horizon. Before my MRI I spoke with the technician and he told me that they can do an MRV but as of yet they don’t have a specific protocol to follow. Hopefully Dr. Haacke’s efforts will be able to change this shortly! I was also told that False Creek Surgical can do the procedure and possibly the Doppler ultrasound but at the time their head doctor hadn’t confirmed this. People have to be cautious in getting tested because it can be useless if not done by the proper protocol needed to move to the next step to correct the blockage and I don’t think we’re there yet.
The Buffalo CCSVI study has been halted until later in January to give researchers a chance to analyze results from the first 500 participants. The study should resume by the end of January but I still haven’t heard of any studies around Calgary. Research proposals are due February 9th but the MS society won’t announce funding decisions until June 14th. The maximum funding amount is only $100,000 so I’m not too sure that we’ll see any significant research from this, we need some serious studies and trials to take place! I think this requires more than the MS society, we need our university research bodies on this and our sceptical MS clinics. I don’t want to wait a year to review the study from Buffalo just to determine we should start doing similar studies here. It seems odd to me that all the initial excitement seems to be fading away except for us MS’ers.
The CCSVI Facebook group was threatened to be shut down! They had to delete some things due to abuse reports that were filed and as long as people aren’t using names and hurting anybody’s reputation or feelings, it will be permitted to stay online. What ever…. Like I said there are some suspicious things going on and conspiracy theories are coming out. Not that I normally pay much attention to that sort of thing but in the end everything comes down to money. Big pharm stands to lose billions of dollars and so do organizations like MS societies and you never really know where influence is coming from. Many people are looking into direct funding opportunities into CCSVI research and diverting their donations to a more specific cause.
I totally agree that we need much more research into Zamboni’s work and we can’t just open the flood gates to everyone with MS to get tested but we can’t take years to get into it. I won’t be seeing my neurologist until January so I really don’t know his position. Once there is an established and accepted protocol for MRV or ultrasound I will be getting a referral post haste, I really want to know if I have blockages! If in fact I do then I’ll really be on a mission to have my veins cleared and allow the blood to flow properly. I really do believe in this theory and Dr. Williams’s hypothesis makes so much sense as well. I never realized that I grinded my teeth but I’ve seen the evidence now and after wearing an aqualizer for less than a week I had it ruined! An aqualizer is a similar to a night guard but quite temporary, it has two pouches filled with water that keep your teeth from touching and I had them burst in no time.
After more research into his hypothesis I’m sure it has an effect, not just causing pressure changes and bleeding in the brain but that the end result actually is a cause of CCSVI. If this is the case then I’ve been unconsciously doing some big damage. Dr. Williams said I have temporal muscles like Arnold Schwarzenegger! I know that I often find myself tensing up; you know how your body and muscles tighten and become stiff when you get cold. I see this response occur quite regularly, not just when I’m cold but to the extreme when I am cold like in the -30° temperature we’ve had in Calgary lately! I know my muscles tense up in my back because like my temporal muscles, my back is totally ripped, I’m sure if I flexed you could identify every muscle. My massage therapist used to tell me that my back muscles were so tensed that it actually hurt her fingers. My layman hypothesis is that this has a similar effect like grinding my teeth or clenching my jaw. Having said that, I’m very eager to get tested for CCSVI.
I still consider myself to be doing quite well but I’ve been experiencing more difficulties lately. At times my eyes are really sore and I’ve been moving around much slower. The winter cold and snow contribute to this but my legs have felt very heavy and I haven’t had a lot of energy or motivation. My balance has deteriorated as well which has been a problem, especially getting around on snow and ice. In the last month I’ve had four falls which is probably more than I’ve had in the last year. I sure don’t feel as young and resilient as I used to.
Anyway this is probably my last blog before the holidays so I wish everyone a MERRY AND BLESSED CHRISTMAS!
LC
Next I found out that Dr. Zamboni is now prevented from performing the Liberation procedure in Italy. A new study will be started but in the mean time there is a lot of pressure being put on Italian authorities and government by many MS groups to allow Zamboni to continue treating MS patients. Bottom line is that Zamboni is not currently performing the procedure. This is also a little strange because he just released his study and I didn’t see anything in it that would warrant this action????but it’s suspected to be some sort of bureaucratic problem.
Coincidentally Dr. Dake stopped performing the procedure shortly after Zamboni was stopped. All of a sudden big news was coming out that one person had died from the procedure and another very serious event had occurred. Well as it turns out the death was not as a result of the procedure but this news wasn’t nearly as important and seems to get little attention. The serious event that occurred was a stent slipping from the vein and moving into the artery. I believe the patient required open heart surgery to rectify the problem but he is recovering well. The way Stanford halted the procedure so abruptly was surprising, there were people from around the U.S. that had flown in for the treatment only to find out their procedure had been cancelled. There are a lot of angry people over this but no more procedures will be done. This could very well be a legal issue for Stanford and perhaps the reason for their abrupt stoppage but one never really knows. Dr. Dake will be starting a clinical trial in January so hopefully those people whose procedure was so unexpectedly cancelled will be first in line for his trial.
I had my MRI on Wednesday and stopped into the MS clinic to see if I could get their perspective on things. I spoke with a head nurse and as I suspected her response was cautiously negative. Of course the death and serious event had a large impact, that’s where I learned of the death. So needless to say there aren’t any studies planned around CCSVI and nothing on the horizon. Before my MRI I spoke with the technician and he told me that they can do an MRV but as of yet they don’t have a specific protocol to follow. Hopefully Dr. Haacke’s efforts will be able to change this shortly! I was also told that False Creek Surgical can do the procedure and possibly the Doppler ultrasound but at the time their head doctor hadn’t confirmed this. People have to be cautious in getting tested because it can be useless if not done by the proper protocol needed to move to the next step to correct the blockage and I don’t think we’re there yet.
The Buffalo CCSVI study has been halted until later in January to give researchers a chance to analyze results from the first 500 participants. The study should resume by the end of January but I still haven’t heard of any studies around Calgary. Research proposals are due February 9th but the MS society won’t announce funding decisions until June 14th. The maximum funding amount is only $100,000 so I’m not too sure that we’ll see any significant research from this, we need some serious studies and trials to take place! I think this requires more than the MS society, we need our university research bodies on this and our sceptical MS clinics. I don’t want to wait a year to review the study from Buffalo just to determine we should start doing similar studies here. It seems odd to me that all the initial excitement seems to be fading away except for us MS’ers.
The CCSVI Facebook group was threatened to be shut down! They had to delete some things due to abuse reports that were filed and as long as people aren’t using names and hurting anybody’s reputation or feelings, it will be permitted to stay online. What ever…. Like I said there are some suspicious things going on and conspiracy theories are coming out. Not that I normally pay much attention to that sort of thing but in the end everything comes down to money. Big pharm stands to lose billions of dollars and so do organizations like MS societies and you never really know where influence is coming from. Many people are looking into direct funding opportunities into CCSVI research and diverting their donations to a more specific cause.
I totally agree that we need much more research into Zamboni’s work and we can’t just open the flood gates to everyone with MS to get tested but we can’t take years to get into it. I won’t be seeing my neurologist until January so I really don’t know his position. Once there is an established and accepted protocol for MRV or ultrasound I will be getting a referral post haste, I really want to know if I have blockages! If in fact I do then I’ll really be on a mission to have my veins cleared and allow the blood to flow properly. I really do believe in this theory and Dr. Williams’s hypothesis makes so much sense as well. I never realized that I grinded my teeth but I’ve seen the evidence now and after wearing an aqualizer for less than a week I had it ruined! An aqualizer is a similar to a night guard but quite temporary, it has two pouches filled with water that keep your teeth from touching and I had them burst in no time.
After more research into his hypothesis I’m sure it has an effect, not just causing pressure changes and bleeding in the brain but that the end result actually is a cause of CCSVI. If this is the case then I’ve been unconsciously doing some big damage. Dr. Williams said I have temporal muscles like Arnold Schwarzenegger! I know that I often find myself tensing up; you know how your body and muscles tighten and become stiff when you get cold. I see this response occur quite regularly, not just when I’m cold but to the extreme when I am cold like in the -30° temperature we’ve had in Calgary lately! I know my muscles tense up in my back because like my temporal muscles, my back is totally ripped, I’m sure if I flexed you could identify every muscle. My massage therapist used to tell me that my back muscles were so tensed that it actually hurt her fingers. My layman hypothesis is that this has a similar effect like grinding my teeth or clenching my jaw. Having said that, I’m very eager to get tested for CCSVI.
I still consider myself to be doing quite well but I’ve been experiencing more difficulties lately. At times my eyes are really sore and I’ve been moving around much slower. The winter cold and snow contribute to this but my legs have felt very heavy and I haven’t had a lot of energy or motivation. My balance has deteriorated as well which has been a problem, especially getting around on snow and ice. In the last month I’ve had four falls which is probably more than I’ve had in the last year. I sure don’t feel as young and resilient as I used to.
Anyway this is probably my last blog before the holidays so I wish everyone a MERRY AND BLESSED CHRISTMAS!
LC
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