Tuesday, April 6, 2010

National MS Society - Encouragement or Discouragement?

What kind of support are we people with physician-diagnosed MS and possible undiagnosed CCSVI getting from the National MS Society? I have a personal experience. I recently went to the National MS Society website to view their FAQs regarding CCSVI (link here). I encourage you to go there and read it to get your own take on the subject. What I got from it was the NMSS doesn't deny that there may be something to recent news and developments regarding CCSVI, but they sure don't come close to endorsing it. They say they are openly looking to provide grants for research, but they don't disclose how much. There is a lot they don't tell us, but it is clear that they do tell us to not jump on the bandwagon. I'm sorry, but I can't do that. One of the positives from the NMSS was a link to the Buffalo Neuroimaging Analysis Center (link here) where they are starting a Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation study. I have submitted my application for this study and await their further communication to see if I will be accepted. You should check that link out, also.

The NMSS calls Dr. Zamboni's procedure for clearing vascular blockages "experimental endovascular surgery." Stories have been spread, reportedly from the NMSS, that MS/CCSVI patients should not travel to Poland or other countries to undergo Dr. Zamboni's procedure for CCSVI because Poland is a third world country, or because many people have died as a result of undergoing this procedure. There are varying degrees of responses to this. Here is a story by Ginger, an MS Blogger who went to Poland to have the CCSVI procedure. I encourage you to read it. But, please, read Ginger's entire blog. She is spitting mad at all the MS Societies.Her blog goes more fully into some of the events she has experienced that relate to the Canadian MS Society. But really, all the MS Societies are related, as you will see when you go to the NMSS website and read how they are all pooling their thoughts on how to deal with CCSVI.

My recent experience? I just want to get the names of some surgeons in the Houston, TX area who may be skilled or have an interest in the CCSVI procedure. I am not looking for a recommendation and I clearly stated that in my correspondence. The NMSS replied that they would not give me any names of surgeons and suggested that I contact my neurologist to discuss that subject. I suppose I will do that. I just thought the NMSS would be more proactive and supportive. My bad.

So, long story short...I have been talking about CCSVI and wondering aloud on my blog what I should do, writing about it and wondering what others are doing. I am now doing. I hope to get in on the Buffalo experience. Next, I want to find a vascular surgeon in Houston, TX who is on the leading edge of this thing. I wonder what the NMSS would say about that...


Have Myelin? said...

This is very interesting. I don't know what to think of MS because it is a very baffling disease. I remember my first MRI showed I had an AVM, or Arteriovenous Malformation. Hmmmmm. Kinda weird, eh? Neurologist said "not a problem unless it bleeds out." That makes me feel better!

I would think you could find a vascular surgeon in Houston!

Dabble and the Mad Sow said...

Hi - the MS Societies cannot recommend physicians of any sort, neuros or cardiovascular surgeons. As a nurse who worked in primary care management, I know how hard those lists are to make up and keep fresh - plus recommending puts the society at risk. Why not post on Patients Like Me or somewhere and ask? you're sure to get some feedback from there.