New here

[JoyceC]

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?

[Algis]

Welcome among us Joyce

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

[JoyceC]

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

[Algis]

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!