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!