Search found 113 matches

by Smilingface
Sun Oct 16, 2011 5:23 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: 33 deaths due to PML
Replies: 5
Views: 2239

Re: 33 deaths due to PML

Does anyone know how many total number of patients on Tysabri as of Oct 4?
by Smilingface
Sun Oct 09, 2011 6:29 am
Forum: Drug Pipeline
Topic: Lingo history
Replies: 18
Views: 11662

Re: Lingo history

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...
by Smilingface
Mon Apr 04, 2011 3:57 pm
Forum: General Discussion
Topic: Progressive MS
Replies: 14
Views: 3459

Glimmer of hope for PPMS

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!
by Smilingface
Sun Apr 03, 2011 5:24 am
Forum: Drug Pipeline
Topic: Progressive MS Pipeline
Replies: 44
Views: 49679

PPMS Trials

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...
by Smilingface
Mon Mar 14, 2011 6:06 pm
Forum: Gilenya
Topic: Humble reminder
Replies: 11
Views: 3776

Double humble reminder

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!
by Smilingface
Tue Jan 04, 2011 6:25 pm
Forum: Drug Pipeline
Topic: Anything interesting out this year for progressive ms?
Replies: 4
Views: 2766

What to keep an eye on for progression

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.
by Smilingface
Mon Nov 15, 2010 5:17 pm
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 13746

Fingolomod with it's own folder?

Mods, that would be great. How do we do it?
by Smilingface
Fri Nov 05, 2010 5:38 pm
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 13746

Fingolimod 0r placebo?

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...
by Smilingface
Thu Nov 04, 2010 5:00 pm
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 13746

Fingolimod

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...
by Smilingface
Mon Oct 11, 2010 5:09 pm
Forum: Drug Pipeline
Topic: primary progressive!
Replies: 1
Views: 2419

PPMS

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?
by Smilingface
Sat Jul 03, 2010 6:04 pm
Forum: General Discussion
Topic: Delayed/Miss Diagnosis of MS need advice
Replies: 5
Views: 8192

Missed MRI Lesions

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...
by Smilingface
Wed Jun 30, 2010 6:31 pm
Forum: General Discussion
Topic: Intrathecal methotrexate shows promising results
Replies: 6
Views: 2310

Intrathecal Methatrexone

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...
by Smilingface
Mon Jun 28, 2010 5:30 pm
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 13746

FTY720/fingolimod/Gilenia PPMS Study

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.
by Smilingface
Sat Jun 26, 2010 3:53 am
Forum: Statins
Topic: Doc says "...take statin, fish oil, and niacin for hear
Replies: 2
Views: 5746

Statin plus fish oil, niacin

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...
by Smilingface
Sat Jun 12, 2010 10:48 am
Forum: Drug Pipeline
Topic: gilenia / fingolimod / FTY720
Replies: 17
Views: 13746

Gilenia

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...

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