Search found 113 matches
- Sun Oct 16, 2011 5:23 am
- Forum: Tysabri (Antegren, Natalizumab)
- Topic: 33 deaths due to PML
- Replies: 5
- Views: 2837
Re: 33 deaths due to PML
Does anyone know how many total number of patients on Tysabri as of Oct 4?
- Sun Oct 09, 2011 6:29 am
- Forum: Drug Pipeline
- Topic: Lingo history
- Replies: 18
- Views: 13213
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...
- Mon Apr 04, 2011 3:57 pm
- Forum: General Discussion
- Topic: Progressive MS
- Replies: 14
- Views: 4074
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!
- Sun Apr 03, 2011 5:24 am
- Forum: Drug Pipeline
- Topic: Progressive MS Pipeline
- Replies: 44
- Views: 60097
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...
- Mon Mar 14, 2011 6:06 pm
- Forum: Gilenya
- Topic: Humble reminder
- Replies: 11
- Views: 4671
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!
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!
- Tue Jan 04, 2011 6:25 pm
- Forum: Drug Pipeline
- Topic: Anything interesting out this year for progressive ms?
- Replies: 4
- Views: 3176
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.
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.
- Mon Nov 15, 2010 5:17 pm
- Forum: Drug Pipeline
- Topic: gilenia / fingolimod / FTY720
- Replies: 17
- Views: 15038
Fingolomod with it's own folder?
Mods, that would be great. How do we do it?
- Fri Nov 05, 2010 5:38 pm
- Forum: Drug Pipeline
- Topic: gilenia / fingolimod / FTY720
- Replies: 17
- Views: 15038
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...
- Thu Nov 04, 2010 5:00 pm
- Forum: Drug Pipeline
- Topic: gilenia / fingolimod / FTY720
- Replies: 17
- Views: 15038
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...
- Mon Oct 11, 2010 5:09 pm
- Forum: Drug Pipeline
- Topic: primary progressive!
- Replies: 1
- Views: 2768
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?
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?
- Sat Jul 03, 2010 6:04 pm
- Forum: General Discussion
- Topic: Delayed/Miss Diagnosis of MS need advice
- Replies: 5
- Views: 8564
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...
- Wed Jun 30, 2010 6:31 pm
- Forum: General Discussion
- Topic: Intrathecal methotrexate shows promising results
- Replies: 6
- Views: 2707
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...
- Mon Jun 28, 2010 5:30 pm
- Forum: Drug Pipeline
- Topic: gilenia / fingolimod / FTY720
- Replies: 17
- Views: 15038
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.
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.
- Sat Jun 26, 2010 3:53 am
- Forum: Statins
- Topic: Doc says "...take statin, fish oil, and niacin for hear
- Replies: 2
- Views: 6850
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...
- Sat Jun 12, 2010 10:48 am
- Forum: Drug Pipeline
- Topic: gilenia / fingolimod / FTY720
- Replies: 17
- Views: 15038
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...