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My neuro recommended the following plan if I stop. Take 90 days to clear out Tysabri. On day 60 have 1 dose of IV 1,000 mg. steroids to protect from any relapse coming off. Then on day 90 start the new drug which would have been Gilenya. Anyhow, I tested JCV negative so I can stay on Tysabri.

I'm a bit confused here too. You've been off Gilenya now for 2 years? (and took it for only 6 months?)--I wasn't clear about your time line. So how can a herpes infection you have now be definitively linked to a drug you took 2 years ago? Aren't there many other causes for triggering herpes includin...

My doctor states that if I go off Tysabri the protocol for him is: 1. wait 60 days 2. on day 60 I would get 1,000 mg of IV steroids for 1 day 3. on day 90 I would start Gilenya. The IV steroids are a precautionary measure to protect from any kind of rebound of MS while the Tysabri clears my system. ...

Hey Mark, I haven't been in the CCSVI forum in months but came back today to find your recent post. There are a few people I have been wondering about and you were one! I'm glad to know that things are still stable for you. WHOOHOO!! I am getting ready to go back and have a repeat scan done to see i...

Salvatore24 wrote:
Prof, from the time that the 90% stenosis was found, until you had the venogram in which the stenosis was "gone" were your symptoms any worse or better?

No, my symptoms were exactly the same from the time of MRV to time of venogram.

Hi Jen, I've been off the forum for the past month and someone pointed me to your post. I'm sorry you found yourself in the same situation I did. As someone noted above, I was told by Stanford I had 90% stenosis in my lower jugular veins but an IR went in 2 months later with the venogram and it was ...

Kat, I wondered that myself. I don't really know because I believe the only image recorded (which I saw) was the flow inside the jugular veins from the catheter that was fed up from my groin. But I will certainly want to know this when I go back for the 2 month check up. I have some more questions t...

Thanks Cheer, I had forgotten about the Sardinia children research. I'll pass that along to my doc. I had already given him a reference to the inclusion of CCSVI as a VM by the phlebologists. Yes, this is all new evolving research and I hope the vascular and IR docs continue pushing in new and impro...

That is quite interesting about the possibility of severe artifacting. What does the NIH use instead? Do they go with Doppler, CT scans (despite all the radiation) or just start right away with a venogram (radiation too)? I will certainly ask my doctor about this--I know he has done thousands of sca...

Again, no medical training, just trying to make sense of it. If your vein was "pancaked", that would mean that from one perspective it would appear normal, and from anolther it would appear thin / flat. Without being told specifically otherwise, I assume the flouroscope used during the pr...

Yes, I had been on Tysabri for more than a year when I got the MRV in Dec.

mangio wrote:Prof8,
Really interesting. Were you on tysb before the test in Dec?

Good question annad. I feel pretty much the same now as I did in December. Weird, huh?

Dr. X and I went through everything looking for answers. And he is one smart man. 1. I do not think this is doctor error. He has been doing this for 25 years, is well known in his field, has headed several IR/vascular intervention national organizations, and has been chief of an IR dept. at a top me...

Yesterday I went to have balloon angioplasty done. If you've followed my other thread you know my story of going to Stanford (having surgery canceled), getting tested, and coming home to find someone to do the procedure. Dr. X at home (interventional radiologist) went in and discovered both my lower...

Hi Chicagoboy! I was one of the Stanford cancellations too. I was to have the procedure on Dec. 9th. I understand your frustration. But you have made some terrific progress. You actually have scans in hand that show stenosis. This puts you at an advantage. Have you touched base with every radiologis...