This Is MS Multiple Sclerosis Knowledge & Support Community

Does anyone know how many total number of patients on Tysabri as of Oct 4?

Greetings Lars and others! Any change in your status Lars? Are there any exercise, physical therapy advice you can give us? Any idea of timeline given to you for improvement by study folks? How often are you being checked now and what are your neuros checking you for? Thanks and hope my questions ar...

I have taken fingoliomod for over a year now and honestly feel it has set the clock back on my progression. I think my EDSS was 4.0 when I started in the trial, it maybe the same now but my testing is showing more strength. I certainly feel better. Hopefully, there are others like me!

Greetings from NC Jam! I have been in the fingoliomod trial for a year with positive results. My energy level has greatly improved and my neurological testing is showing increasing strength. I feel like my progression has halted. Fortunately, my side effects have been temporary and minimal. Any word...

I agree. Doing great things but not a cure. I have reached the one year benchmark in the PPMS trial. I am stronger and my progression has slowed.

I feel that this drug is setting the clock back for me in my disease process.
Not a cure but most definitely a great thing!

Also of interest maybe the anti lingo drugs for restoration in the future.

I think I am having some luck with Gilenya at least slowing down my progression now. Should be able to tell better in 3-6 months.

Mods, that would be great. How do we do it?

For the first 3 months of the trial I wasn't sure at all, although I had the mild side effects of headache, nausea and runny nose. But then stuff started happening --- the energy gain, the call from the neuro that said I had to go in for extra pulmonary function testing because my lung function drop...

Hi Bewitched, I started taking fingolimod seven months ago. I feel better than I have in years. So far the only negative side effect I have had is a drop in my lung function. (That's why I know I'm not on the placebo) I have had some annoying side effects -- mild headache, runny nose, mild nausea. I...

Thanks for the post Scorp,

I was just thinking there seems to be more and more for PPMS. Gilenya, cannibinoids, Idebenone, ACT 128800 and now what you just posted. Very cool.

What else did I leave out?

I have a very similar story. Two neurologists from the same practice mis-read my MRI missing the two lesions on my C-spine. I failed to get the diagnosis of MS since I had no lesions. After 9 months, since my symptoms were worse I referred myself for a second opinion. The new neuro saw them right aw...

This is interesting. My neuro mentioned it to me a few months ago but honestly I was too chicken to consider it. His personal experience with it was not great so I just wasn't comfortable with the idea since my progression is so slow and I am able to still work with my disabilities. Are we talking a...

Hi ScGirl!

The study I'm in is at the CMC/MS Research Center, part of the Carolinas Healthcare System in Charlotte. The contact person is Rita
Rouse at 704-446-1902. I'm pretty sure they are currently enrolling with a plan of having 10-12 patients.

My Primary Care Doc has recommended a similar regiment for me. The Carlson's fish oil, niacin (starting with 50mg and building up), red yeast rice and 40 mg of Lipitor or a low dose of a newer statin called Livalo. I'm hesitant to start the statin because of reports that it may inhibit remyelination...

Hi Dignan, Actually, the trial I'm in is currently recruiting. I know my study center is trying to come up with 10 participants who qualify. It's the only site in NC and in a large city so I have been a little surprised how long its taking to fill the slots. Am I correct that there is still an exten...