This Is MS Multiple Sclerosis Knowledge & Support Community

Hi.

I am Joyce, 56. I was diagnosed 14 years ago although I believe I had it for 35 years. I have primary progressive.

My neurologist is one of the top doctors in the US; I am in Atlanta.

I qualified for a double-blinded clinical trial to last three years. Only ten people were approved, and I was the first one. I was to receive a five-minute infusion twice a year instead of daily shots. I am in a wheelchair, and later I was able to walk the length of a football field! The FDA was pushing this drug forward. After two and a half years I was ready to receive my last infusion, and it was suddenly pulled! No explanation was given! My doctor called it "contraversal." I found out I was getting the drug itself, not a placebo. I also would have received the drug for free for life.

Even though it was to be for secondary progressive, it worked wonderfully for me. I was just shattered! I am not on any shots anymore and hope to go overseas next year.

Where is the best place to go?

Welcome among us Joyce

What drug was that? Why do you want to go overseas for?

The drug wasn't given a name, but I'll have to go back and find the trial name it was given so you can look it up.

There was even a lady from Poland coming to Atlanta every three months for this trial.

I want to go overseas for the latest new treatment for my blocked neck veins. My internist picked up on it, and I have been having an imaging-type test done on them the last two years.

I just got on this site last night at midnight so am unfamiliar with it. Where do I find the places where the procedure is being done?

~Joyce

Check here for your neck Joyce:

http://www.thisisms.com/forum-40.html

It is named CCSVI (Chronic Cerebro Spinal insufficiency)

Hope this help; cheers!