News for the Multiple Sclerosis Community

Have you ever participated in an MS clinical study?

Yes, I am in one now
12% (37 votes)
Yes, I am not in one now but have been before
14% (43 votes)
No, but I would consider it
46% (140 votes)
No, I would like to but can't seem to find one
16% (49 votes)
No, I would not participate in one
7% (20 votes)
What's a clinical study?
2% (7 votes)
Other (please comment)
2% (6 votes)
Total votes: 302
I participated from SUNY at Stony Brook. My doctor was Dr. Coyle and the vaccine was made Immune Systems Corp., I believe. I've recently changed neurologists to another MS specialist closer to home but I still consider Dr. Coyle my MS doc, having Dr. Mancaluso, my current MS specialist share my test results with Dr. Coyle. I'm actually now in a bind as Dr. Mancaluso's tests indicated a high no. for nutralizing antibodies to Betaseron. These are the tets I am forwarding to Dr. Coyle. Dr. Mancaluso had switched me to Copaxone because of the neutralizing antibodies to Betaseron. I'm now hoping Dr. M. will consult with Dr. Coyle about these tests.
Oops! Many typos. That is neutralizing antibodies and "tests". Sheesh.
They don't seem to conduct clinical trials in my geographic area, but I'd like to help the cause. On the other hand, the most fearsome outcome would be to receive some drug which really works only to have it taken away at the end of the trial while the FDA plays Tiddily Winks over what to do next.
That is what happened to me. I got stuck on placebo (its a crappy job, but someone has to do it) for 2 1/2 years and when I received the active drug and it started to help, the drug companies withdrew it. I can't believe its taking so long to come back. I guess I will just wait and hope this damage that I have endured will be reversed. It is worth the risk to me because I know Tysabri helped me.
I too was in the Tysabri trial. I found out I was on the medicine during the study (2 yrs) then a couple of months after. I can say that it helped me as well, but I completely understand it's being pulled. I've been told a new study will start in January, Tysabri only, no Avonex. I'm planning to try again.
I would like to have had my blood drawn etc, but since I do not 'do' the ABC MS drugs, I am apparently not allowed to be a subject. I am not willing to try unproven drugs since I don't even want to do the 'proven' ones though. Wholistic treatments seem to have kept my MS at about the same level the drugs promise to do -- and no side effects.
THAT is one of the biggest mistakes that MS patients make . . . NOT getting on disease MODIFYING medications in the beginning--"I don't FEEL bad yet, so I'm fine." That is terrible logic, and damage is accruing as you read this. Holistic approaches may help with symptoms, but there isn't enough proof that they slow down the damage. RIGHT NOW multiple sclerosis IS a progressive disease--ther is NO stopping it . . . it doesn't sleep. The interfereons and the glatimer acetate (Copaxone) help to slow the progression. Doing nothing is like playing Russsian Roulette with all the bullets in the gun. Sorry to say, but until there is concrete proof, using holistic approaches is like doing nothing. Just because you feel good NOW does not mean that the damage has stopped by no means. The ABCR drugs help to reduce the severity of relapses and the frequency, and the amount of damage from inflammation (lesions). Please take this info to heart and also talk it over with a helth professional. And, no . . . a holistic medicine practitioner is NOT a professional doctor (or what THEY like to call an allopathic doctor). You need a good neurologist and internist. Any one of the people that read these articles could reccomend some very good ones anywhere in the world.
I dont take any medication for anything. I found out I had MS in 2003.I dont believe are body need these ABCR drugs. Everyday, medications are killing people. Are body are not designed for all the grab we put in them. I listen to doctors for years and suffered for it. Since I have changed my life style and exercise and eat healthy I feel better now than I have ever felt in my life.I have lost wieght, fixed my insulin problem,lowered my cholesterol.I no longer have acid reflex.I did all that without taking one pill. My life is in Gods hands not doctors.
Both parties make valid points about medical care. I have been both helped and also seriously harmed by doctors, so I agree with both view points. The one thing I have learned is that all doctors are not created equally and there is a vast difference among them. I try to research everything but in the end, you take a chance and go with your instincts about what is right. I worry about taking this interferon, doesn't everyone?
I would like to share with all of you what I have learned.Since I have cut out all red meat,dairy,sugar, alcohol,yeast,soda,coffee,caffeine,all artificial sweetner,colors and flavored foods I can honestly say I feel 100% better. I believe MS has alot to do with what we put in are bodies.But drug companies dont want you to think that.I believe in putting good things in my body so that my body can heal itself.My new MRI shows that the lessions I had on my spine are no longer there. All I can say is PUT GOOD THING IN YOUR BODY and see what happens. You have nothing to loose and everything to gain. God bless all of you.
i was in 3 different clinical trials. always trying to find something better. the worse part of being in a study is being randomized to placebo. i understand the need for this group, but the placebo group takes a big chance.
I would love to participate in a clinical study but I do not meet inclusion criteria for any that I know of -- most studies require that you are able to walk at least 25 feet and have RRMS. I have SPMS with an EDS score of 9.
Tovaxin may be an option for you. I'd also look into Rituxamab. I believe they might have a trial suitable for you. I'm only suggesting these as possibilities. I have no direct knowledge of curent trials.