Saturday, October 31, 2009


Since my last post I’ve done a lot of research on this new CCSVI break through and I’m just as excited now after learning what it’s all about. It seems to be moving quickly in the U.S. because there are apparently many centers working on trials. I’ve looked at the research and treatment procedures carefully including the diagnostic testing required to determine if CCSVI is present. I’ve found some great websites in this latest research, joined a couple of online forums and talked with one of the early patients to undergo the procedure. So far I’ve found this to be as legit as it gets, it’s amazing that it’s received so little attention or exposure. It is quite new and possibly because this is a potential cause and treatment (cautiously optimistic cure) for multiple sclerosis but it doesn’t involve any pharmaceuticals. If anyone wants to find some more detailed info you can check, or, they are all very informative.
The Calgary MS Clinic doesn’t seem to know anything about CCSVI but I’m trying to discuss this with my neurologist who is apparently also the director of research but he’s out of town now. I may have found a doctor in the U of A radiology department who is conducting research into this but these studies are not well known and difficult to source. Dr. Dake at Stanford has now performed the procedure on over 50 MS patients but there are no published results yet but he is starting a trial soon. I’ve contacted his office and I’m waiting for a patient coordinator to call me but I have found out some information. It sounds like a simple procedure that would just be like a day surgery; apparently he can perform three per day. As for the sounds like a “retail price” can be as high as $80,000 all the way down to $30,000 for an insurance company price. I haven’t yet looked into whether or not I would have any coverage for this, doubt it, but where there’s a will there’s a way. Hopefully I can find a trial here at home and not have to pay anything.
Dr. Dake learned these procedures and worked with Dr. Zamboni who discovered CCSVI in MS patients and has treated over 500 people. As with many new advancements it appears to have phenomenal results on those with relapsing remitting MS but less pronounced for the more progressive stages of the disease however further test results are needed. I believe this is where the role of stem cells will come into play. If it turns out that we know how to stop the disease, next we must learn how to repair the damage that has already occurred. Take it from someone who knows the progressive side of the disease, the ability to definitively stop the progression is a huge relief, there is so much stem cell research being carried out across the world that I feel confident the next step of recovery will not be too far away.
In the mean time life continues so I’ll talk about the new treatment that I’ve been trying recently. I’m always receiving tips on new treatments to try but it’s very rare that I actually end up trying anything. In the last 13 years that I’ve had MS I’ve been on almost any remedy you can think of whether it be diet or vitamins, but I’ve not found anything that made a significant difference. I’ve spent a lot of money and faced a lot of disappointments so I avoid most suggestions but usually research them all on the internet. Recently I was told about a doctor that practices only Chinese medicine, herbs, acupuncture and massage. I was told that he can tell what your ailments are by simply taking your pulse and that he’s successfully treated many people suffering many different ailments. My brother in Los Angeles has been seeing this type of doctor and swears by him, to the point that he’s pretty much abandoned all other doctors and pharmaceutical prescriptions.
So on this odd occasion I decided to give him a shot and booked an appointment. He also runs a herbal pharmacy which is quite impressive; there must be hundreds of different herbs etc. When I came into the office I was asked what my problems were and I replied “well I’m waiting for Dr. Mah to tell me”. He has a very small examination room, one chair for him, a tiny table and one chair for the patient. I was brought into this room and sat down in front of Dr. Mah who speaks very little English but seemed somewhat impressed that I knew some Chinese. He basically took my pulse on my right wrist then moved to my left and looked at my tongue; this took less than a minute. Through his interpreter he said that my shoulder and lower back are sore, I’m not sleeping well and sometimes have a problem breathing and that something was not right with my liver and kidneys, apparently I was out of balance. Well I don’t think I was giving any indications that my shoulder was sore and my back has been a problem for ages but wasn’t particularly bothering me at the time so the fact that he nailed these troubles impressed me. I wasn’t sleeping well, mainly due to my frequent urination and oddly I do have this weird sensation of breathing difficulty that usually occurs at night but is very short lived. I haven’t thought about it much and never spoken of it so again I was surprised that he identified this. I figured that if he could tell all of this by my pulse that he deserved a shot. The next thing I knew he was scribbling away in Chinese on a sheet of paper that turned out to be my prescription. Seven lunch size paper bags filled with who knows what and instructions on how to prepare the medicine. First I have to soak it all in cold water for 2 to 4 hours then bring it to a boil and simmer for half an hour. Then drain the liquid and fill up the pot again to boil and simmer for another 20 minutes. I can’t really call what I was boiling up herbs because it was made up of tree bark, dried out plant material and a bunch of really weird unidentifiable stuff, see the photos. It stinks up the whole house when I prepare it with a very pungent odour and tastes absolutely horrible! To paint an accurate picture of how bad it is, my roommate said he’d rather drink a beer full of cigarette butts! Trust me it’s brutal and I have to drink a glass in the morning and one at night, can’t believe I did this for a week.
When I went back to see him a week later I actually wasn’t feeling very well but I guess that can be expected initially, it’s pretty hard to communicate. Anyway he wrote out a similar prescription but I said I would come back the following week to pick it up because I was going to be out of town for thanksgiving. This was a bit of a lie because I was actually planning to bail on this Chinese medicine idea. After speaking with a few friends who knew of this doctor and his positive reputation and a reassuring phone call from my bro I decided to continue. Like a regular prescription, I was told that it will take time to work and I have to take it for the prescribed amount of time, YUK!!! So I picked up my next batch and made it through another week. The third week I went back he suggested I do acupuncture and Chinese massage in conjunction with the herbal medicine. I agreed and received the treatment on my third visit because I was feeling better. I’m now at the end of my last batch but I think I’m going to leave it there. The herbs alone are costing $70 to $80 per week and if I include the acupuncture and massage it’s over $150 per week and that’s with a 2 for 1 deal on the massage and acupuncture. My benefits have run out for this so I’ve decided I can’t afford to do this right now. Maybe I’ll start again in January when my benefits renew for another year. I do think there is merit to this therapy but for now I’m quite happy to not drink this putrid concoction anymore. We’ll see what happens in the New Year and more importantly after I find out more on the CCSVI procedure. I’ll keep my fingers crossed!

Thursday, October 22, 2009


It’s been a long time since I’ve been this excited about new research findings. Yesterday I received a phone call from a woman who became aware of me and my quest for a cure through the W-Five documentary and was somehow able to locate my phone number as many others have done but this call was special. She was extremely excited to tell me about new developments that have recently surfaced indicating that a cause for MS has been discovered as well as a treatment that almost sounds like a cure. The causes of the disease have puzzled doctors and researchers for years and no concrete answer has ever been proven as far as I’m aware, until now that is.
CCSVI (Chronic Cardiospinal Venous Insufficiency) is a condition that is not new but has only recently been proven to have a causal link to the development of MS. CCSVI is a chronic condition where blood from the brain and spine has trouble getting back to the heart. It is caused by a narrowing of the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain, spine and tissue surrounding the spinal column resulting in demyelinating lesions on the spine causing paralysis, balance and bladder problems. Dr. Zamboni is a vascular surgeon from the University of Ferrara in Italy who has been studying this condition since 1987 but until recently very little has been published. Most people have not heard of CCSVI and its link to MS until research started to be presented in 2009.
Dr. Zamboni’s work along with others has shown that removing blockages in the veins by angioplasty procedures similar to removing blockages in the arteries in cardiovascular disease have shown a decrease in the number of relapses, reduction in the number of active brain and spinal lesions and great improvement in patient quality of life. One year after the procedure the rate of relapse and probability of acute attack decreased more than 4-fold and demonstrated improvements in mental status and chronic fatigue! Dr. Zamboni has been testing the procedure on his Italian patients for 2 years and found that many have greatly reduced symptoms and are showing signs of healing. He also tested the procedure on 18 people who were in the hospital due to a bad relapse and found that after opening the blocked vein with the balloon procedure, the relapse symptoms stopped and were reversed in 4 hours to 4 days without the usual use of steroids.
The interesting part of this discovery is that 100% of MS patients tested have had CCSVI whereas none of the normal patients (control group) had it and none of the patients with other neurological diseases had it, only people with MS! In a related study by Dr. Salvi, head neurologist at the University of Bologna, out of 500 MS patients tested, 100% had CCSVI. A further study is underway at the Jacobs Institute at New York State University that will include 1000 patients. Specific tests to determine if CCSVI is present are done by what’s known as a Doppler ultrasound or magnetic resonance venography, which require a doctor who specializes in radiology rather than neurology. I don’t believe these tests are readily available but before that even happens it’s critical to get our MS clinics and research bodies engaged in this treatment. The only doctor I know of thus far who is testing this concept is Dr. Drake, Chief of Cardiovascular and Interventional Radiology at Stanford University. I think he has used the procedure on about 18 people so far and is enlisting more patients to take part but apparently it is very difficult to be accepted. I have not seen any results from his work but news on this procedure is developing almost by the hour. Even though this breakthrough is new to me and most others, there is an incredible amount of information available on the internet and a Facebook group focused on this subject.
Given the history of caution demonstrated by Health Canada and other organisations like the MS Society, availability of this procedure will likely take over five years. In the mean time I am all over this new development and if it takes getting into a clinical trial to gain acceptance, I’ll be first in line. I have heard that the procedure will be available, likely in the US but is extremely expensive so perhaps I’ll have to keep my eye out for foreign clinics offering the treatment. Either way, this is the most exciting news I’ve heard on multiple sclerosis since being diagnosed over 13 years ago. A huge thank you goes out to Debra for making the effort to find my number and call me with this amazing news!
Stay posted for further developments,