News for the Multiple Sclerosis Community

What has helped your MS the most?

One of: Avonex, Betaseron, Rebif, Copaxone
31% (134 votes)
Tysabri (while on the market or in trials)
5% (20 votes)
Steroids or Chemotherapy
8% (37 votes)
Proper diet and exercise
13% (57 votes)
Other prescription drugs
9% (41 votes)
Other alternative approach
10% (44 votes)
Doing or taking nothing has been best
5% (24 votes)
Nothing I have tried has helped
19% (82 votes)
Total votes: 439
Trying to reduce stress by reducing work hours and staying out of the heat and eating lots of fruit and veggies (and not so much alcohol, sadly :)) is the best thing. Avonex was a disaster for me too, and Copaxone, no walk in the park and not worth it. I'm on no meds and feel better for it.
My boyfriend has been taking avonex for quite sometime now and it has been awful its actually making him feel worse but the doctors keep tellin him to stay the course but we are starting to think differntly..we are new at this and are willing to listen to anyone for advise...theres got to be something better then avonex..
art's picture
feel free to email or call me if you'd like to discuss further. art at acceleratedcure.org or 781-487-0008
The real problem with this disease - too many treatment choices and not enough real information on what really helps. The ABCRs are the first line therapies but their efficacy in terms of relapse rates (whatever that really measures) is pretty poor. The side effects can be horrid (injection site reactions, flu symptoms, liver problems). Chemo drugs might be more effective but even more horrid side effects are possible. ABX is another option but no conclusive proof that bacteria is involved. Some users say it works others say not. LDN - again mixed responses, some say it is fantastic others say did nothing. Monoclonal antibodies - look good but has been a death on the Campath 1-H trial and long term side effects not really known. Many more on the way but all on the assumption that MS is an auto-immune / inflammatory disease. Tysabri - pulled following deaths. Reducing stress - easier said than done if you didn't have a degenerative disease of the CNS. Eating well - so why aren't all morbidly obese burger eating / beer swigging / smokers falling down with this disease? Bee stings / crystals / etc etc. Too many options when all we want is something which halts this disease in its tracks and helps us rebuild. And once we are SP or start with PP they tell us there's not much we can do. Art, I think you said that you were off to the joint ACTRIMS / ECTRIMS conference at the end of September. If there was a Q&A this issue might be raised. We are in a position where too little is still known. The current treatments are not that great and more and more will be on the market within the next five years. On the one hand this looks good but on the other are we expected to keep chopping and changing? Why couldn't I have had an ulcer, psoriasis etc etc. I'm sure that these are grim diseases but at least the treatments are relatively effective and you don't have to hunt down the best treatments for yourself (isn't that what we pay doctors to do on our behalf)! Thankfully if your excellent work at BCP works out we will get some treatments that address the root cause rather than the speculative treatments that are currently around.
art's picture
Unfortunately we haven't seen any appropriate forum to ask the questions you raise to an audience that might have a reasonable answer. But like to ask people in person! They usually acknowledge they are good questions and indicate we don't know.

Also, don't worry, you can have an ulcer *and* MS. I'm working on it! :-)

Acetyl l-carnitine was shown to be more effective than other fatigue drugs but it was never compared to MS drugs for lesion load. Also, there are conflicting studies of inosine. Alpha lipoic acid has shown to improve lesion activity. A study on Green Tea Extract presented at the Neurologist conference earlier this year showed slight promise. To agree with the earlier post, our bodies and the kind of MS varies from one person to the next. The best thing to do is stay educated and experiment to see what helps.
I was surprised that more of the MSNews readers don’t use alternatives like acetyl-L-carntine (which was clinically proven more effective than the prescription meds by the National Multiple Sclerosis Society) or inosine (also proven effective in a phase1 trial and in the midst of a NIH funded phase ll). Those are the kinds of things you’re only going to hear about from a community based support site like this. Or is it that the readers consider those as nutritional supplements and thus included in “proper diet”?
Avonex was a real disaster for me, and Copaxone just a useless mess. I wish I'd never let myself get talked into taking either one. LDN (Low Dose Naltrexone) is the only thing that has helped me.
I don't think that a general blanket statement like that is helpful or wise. MS affects everyone differently, and no two metabolic systems are the same either. What may be helpful for one person amy be harmful to another. A better suggestion is to try different things with diet and exercise (with a doctor's oversight) to see what works best.
A Vegan Diet with no animal protein is a must!
I proved to myself that avoiding saturated fats kept me free from exacerbations for about 10 years! Eating saturated fat always led to an attack with 36 hours.

Intrathecal Baclofen Pump has made a HUGE difference.