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

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

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

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

READY, SET...GO!!!

I thought the W5 episode was awesome and ironically seemed to follow the same path as my blog! It will bring so much exposure that anyone with MS will hear about it and I’m sure be over the top with excitement just as I was when I first learned about CCSVI. I am sure that MS clinics and societies will be overwhelmed with phone calls today. I knew that cautious scepticism would be the MS society’s position but to discourage people from being tested is just wrong. First of all, you can’t just go and get tested, so far I don’t know of any facility in Canada other than Dr. Haacke that is ready to do the testing and I know that if any are that they have been overwhelmed with enquiries and willing volunteers. Hopefully we can keep the pressure up so that an accepted protocol like Dr. Haacke’s can begin to spread around Canada. Demand for these tests is going to be huge so this may pose a problem but we have to keep the heat on and demand that our MS clinics and research bodies take this seriously. I spoke with the Calgary MS clinic as recently as last Thursday and was met with complete scepticism and negativity regarding CCSVI although I’m sure that wasn’t an official position. My point is that everyone with MS should contact their neurologist to enquire about CCSVI so they are inundated with requests and feel forced to act. There’s no way we can let this break through take years to get past the trial stage and become available to those of us suffering. As Dr. Zamboni said, MS is a progressive disease and people can’t afford to wait around while our bodies deteriorate.

Having said that, we must also realize that this is only part of the big picture, there is so much more to learn. Reading through some of the info being posted on MS internet forums makes you understand that there are still many questions and unknowns regarding CCSVI diagnosis and treatment. We must be cautiously aware that this is not going to be the answer for everyone but it does give us a running start. I do believe that this breakthrough will spawn many new discoveries and kick start new research ideas across the world; I think this is the beginning of the end of multiple sclerosis! Now that CTV has broken this story I expect American media will jump on board and maybe things will begin to snowball. The internet fervour has already begun to heat up and where there’s a new story, there will be coverage.

CTV came by my house today for an interview with Avis Favaro to get my reaction to the news. Even though it wasn’t new to me I’m still totally excited and even more so that the story got national exposure. It was quite short but I think will air on the six o’clock national news.

BREAKING NEWS...I was just told that the MS society will be opening up funding for CCSVI research in January! Now that’s what I’m talking about, look how quickly their position turned! Once we get enough people on board and can put enough pressure on our medical and research bodies, things will really start to move.
LC

OUR UNDERSTANDING IS IMPROVING

I met for a consultation today with Dr. David Williams; he’s actually a dentist but the man studying the new MS treatment I referred to in my last blog. It’s a simple concept on the face of it but very complicated in the details. I always try to research or fact check any information before I include it in a blog, I don’t want to be responsible for any misinformation but I do encourage correcting comments. In my last blog I made a statement that may have inferred W-5 wanting me to keep quiet about CCSVI but the reference was only in terms of posting an airdate until the station had confirmed it. W-5 has done a great job searching out and reporting on MS research and advancements and I do commend them for raising awareness on many issues in an unbiased manner which I don’t speak of much when talking about the media. So I was careful not to talk about Dr. Williams work, I just didn’t know enough about it. After today I know quite a bit thanks to a very thorough explanation and demonstration with a skull showing how the bones move etc. but way too detailed for me to reiterate it. The simple basis of his theory is that an incorrect bite and grinding of teeth can cause bleeding, pressure or other detrimental changes in the brain. There is a very complicated interrelated series of events that occur between jaw bones, facial and temporal muscles and bones and our brain. Essentially what he has found is that by stopping the damaging and hidden effects of grinding teeth, MS symptoms have abated. He has been working on this theory for over ten years but I think he’s only studied around 30 MS patients however they have had some astounding results.

For some people just stopping the bleeding has been enough but for others the same positive results have not occurred or at least not to the same extent. He believes that in some of these cases the blood can’t drain and so the problem worsens. He has been studying Dr. Zamboni’s work and will be inviting him to Canada to explain and discuss this research. He believes this is a small part of a much bigger puzzle that we are now finally beginning to understand. With the basic principles that are now being proven, scientists and doctors from across the spectrum can begin opening up a whole new world of ideas and treatments. If only it were that easy, unfortunately it’s not. There’s a lot of science here and without a road map it’s very difficult to understand. I’m hopeful that Dr. Williams can put together some information and websites that can explain things better than I can. He is trying to talk with neurosurgeons or specialists with the brain and scull because it will take more expertise to really start understanding things and he seems quite aware of how difficult it can be to get a research trial set up.

In the meantime why not give it a try; at least I’ll stop grinding my teeth. He’s got a pretty cool set up for taking a mould of your mouth and teeth so he can understand exactly how your bite is working. At least it’s a procedure that should be covered by dental benefits so it won’t cost me a bundle. It is possible that I could notice a difference very quickly like Dr. Williams has seen in the past but I won’t get my hopes up. I am very curious to see if I can recognize a difference in the next six months but I’ll remain positive. As I get more figured out on Dr. Williams’s findings I’ll post again.
LC

THE STORY GETS BETTER!

I’ve got some new developments in the CCSVI discovery and as each week passes I’m hearing more encouraging news. I’ve still not been able to garner any solid information out of Stanford other than confirmation that the cost is $80,000. There are still no published results but I am hearing good news through my involvement in CCSVI online forums. There is a lot of anecdotal evidence of the success of this treatment. One of the early patients to undergo the procedure at Stanford whom I’ve mentioned has shared a lot of information with me. His name is Lew and his blog is linked with mine for anyone that is curious to learn about his experience. Lew just returned from Stanford for his 8 week follow up and reports that everything is great, his stents have set in perfectly.

Many improvements are being claimed due to the procedure but the one that most interests me is relief from fatigue. Fatigue issues are probably my biggest problem and to gain a hand up on this symptom would improve my life immensely! Lew tells me that he normally has to be pushed through airports on a wheelchair but on his last trip to Stanford he walked the entire time and had extra energy to boot! When he was required to walk he would normally have to use his cane but he didn’t even bring it with him on his last trip. He’s told me how he was able to rake leaves from his yard for over an hour which is something he wouldn’t even have considered a few months ago. His gait has improved substantially and when he does get worn down, his recovery time has been cut significantly. The exciting part about his improvements is that his MS is in the progressive stage like mine.

When I first learned about CCSVI I contacted Avis Favaro from CTV to see if she had heard about this new development and she informed me that they had and were already shooting a W-Five episode on it. Kudos to Avis and CTV for finding out about it before I did and basically before it was known by almost anyone in Canada. They flew to Italy to check out Dr. Zamboni’s work first hand as well as Stanford, her impression was that there is a lot more science behind this development than other ideas that have been proposed. She wanted me to keep this quiet until they had a firm air date which has now been confirmed for Saturday November 21st. W-5 will present the report at 7 PM EST across the CTV network, again at 12 PM Sunday on CTV News Channel and also on their website: w5.ctv.ca. Hopefully this will open up a lot of minds and ambition in the Canadian medical system because there seems to be very little going on in Canada.

I tried to contact my neurologist to discuss CCSVI and knowing I wouldn’t reach him by phone I sent an email. He replied saying that under Alberta Health guidelines he is not allowed to use email for any form of patient contact and that a nurse would contact me to set up an appointment in December after my MRI was done. A nurse did phone me to arrange an appointment but also to inform me that I was wrong in trying to circumvent their normal procedure for contact with a doctor. It almost felt like I was being scolded but I wasn’t interested in an appointment, I just wanted to meet for a coffee and have a quick chat. I will now have to wait until December 17th to talk with him.

I have registered with Dr. Emery’s office at the U of A to be enrolled in the program that will be testing for CCSVI but it won’t be up and running for a couple of months. Apparently there is a similar study being conducted by a Dr. Katherine Knox at the Saskatoon City Hospital in a couple of months as well. As far as I know these programs will just involve diagnostic testing but I haven’t heard anything on the procedure to repair the blockage once found. This procedure is now being referred to as “The Liberation Treatment”. It is this instance that will make me very frustrated and angry with our medical system. When asked the question before regarding leaving the country for stem cell treatment or why we have to wait so long for access to new drugs I could see the government’s reasoning behind their cautious policies. However, if it turns out that I’ll have to wait years or have to find a trial in order to have the procedure done I’ll be furious. This is a relatively simple operation performed every day for the heart with perhaps some subtle differences. It’s pretty simple, if you know there is a blockage in the vein then fix it, it’s not like we don’t have the technology! To have to leave Canada for this procedure and pay $80,000 is exactly what the anti-Obama health care lobby loves to hear. Well I’d love to make noise about it here if it comes to that!

I’ve just recently come across another new MS treatment that has its own amazing story and it’s local to Calgary. Coincidentally the theory behind this treatment is directly supported by Dr. Zamboni’s work. They have not released anything publicly yet but I have spoken with the doctor and have an appointment to see him this week. I don’t know how much detail he would want me to publish at this time so I’ll expand on this in my next blog. I won’t make it too long before I post again.
LC