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Hi
I go to the hospital once a month to have my tysabri treatment. three months ago I was treated together with a man. He told me that he had a mild disease and that he was diagnosed 13 years ago. He was able to walk, but was very plagued by the fatigue. He could not write. Before he was diagnosed, the doctors had been very secretive about what they were finding. He was in the hospitgal for quite a while, and he couldn`t get a real diagnosis. He had to get a little angry to force them to tell him what was the problem. then they finally concluded with the MS - diagnosis, and said that in addition he had some very strange neckveins. they had never seen anything like it.

So now after having learnt so much about ccsvi, I must contact him and tell him about it. I will recommend him to go abroad, to get treatment. Here in Norway things go very slowly!!!!!!

Johnson wrote:This whole thread is fascinating.

I was always dis-satisfied with "Multiple Sclerosis" - it is a catch-all,

Well, I really didn't mean to start a thread and abandon it. I'm sorry it took me so long to return. I do agree with Johnson that MS has seemed to be only a catchall term. From the time of my dx 7 years ago, very little of the 'accepted wisdom' that I've read about MS has made complete sense to me, especially about treatment, so I continued to do what has always made me feel better instead of worse - no meds, only diet, exercise, sleep, laughter...

There have been quite a few interesting posts on this thread. I will clarify a little of what I posted about the lady I met, though. The woman didn't have a name for the jugular condition, and couldn't remember precisely how it was found. She was very sick at the time, and the jugular "narrowing" was picked up during one of her many tests. I don't know if her testing took a few days, weeks, or years, only that the tests led finally to an MS diagnosis - 15 years ago. It seems that once doctors have MS to blame, other conditions can be lumped in with it.

What really struck me was that she interrupted me as soon as she heard the term "jugular veins" to tell me she had "narrowing" in both of hers. That was when I had barely begun my explanation to her of CCSVI. It had been so long ago that she didn't recall all the details, but she didn't get the term "narrowing" from me - she gave it to me first.

Interesting indeed.
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