Help with Multple Sclerosis

October 5, 2004 5:18 PM

MULTIPLE SCLEROSIS

I'm not expecting a cure: just stuff that's helped fellow sufferers.

Apart from the drugs I'm prescribed: I'm trying a low fat/dairy diet, taking multi-vitamins, fish oil & evening primrose oil (which, as a combinaton, aren't a bad thing for me)

Is there anything else that someone with MS has found helpful that I don't know about? I'm thinking about acupuncture? specific exercises? suppliments? or dietary changes? or anything really.
posted by selton to Health & Fitness (12 answers total)

which drugs are you taking, selton?

while I do not have MS, I know quite a bit about it and treatments.
posted by tomierna at 5:45 PM on October 5, 2004

My mom has MS and finds pilates things useful.
posted by ROU_Xenophobe at 5:56 PM on October 5, 2004

It always surprises me when I learn that some docs forget to tell their MS patients not to take hot baths. We know heat triggers MS attacks. Take baths tepid or colder (as cold as you can stand), don't go for long walks in the sun, buy an airconditioner and run it.

Move to Alaska :)
posted by ikkyu2 at 6:37 PM on October 5, 2004

bee stings
posted by lilboo at 8:00 PM on October 5, 2004

It probably goes without saying, but cannabis.
posted by seanyboy at 12:02 AM on October 6, 2004

Response by poster: tomierana:
I've been given Modafinil and Baclofen by my doctor. I had a 3day high dose course of steroids when first diagnosed.

Thanks to everyone, I'll certainly read up about all your suggestions.
posted by selton at 10:06 AM on October 6, 2004

ikkyu2--do you know is that true of only MS, or is it also true of other immunologically-mediated schleral diseases? (yes, there are, in fact, other immunologically-mediated schleral diseases). do you have any links to general information about it? (my google search pulled up a lot and it would be nice not to have to cull through it on my own)
posted by crush-onastick at 10:36 AM on October 6, 2004

You might ask your doctor about some of the interferon based drugs. They might not help the immediate symptoms, like the drugs you are taking, but they will hold the neural deterioration at bay &mdashl; unless you begin to have antibody responses to their large proteins.

They're not easy drugs to take, as they are injectibles, but slowing the disease is much better than the alternative.

I also hear that there will be new drugs out in 2005 which will be even more effective.

Cold temperatures will help the symptoms. Anti-inflammatories, like the steroids, will help, especially if you are having a flare-up. The very powerful steroids can be toxic to your liver, so beware.

I'm not a doctor, and I'm not going to suggest a specific interferon (as there are three or four), but make sure your doctor lets you know the differences between them, and why they work differently, even though they are very similar in terms of the molecules.
posted by tomierna at 11:05 AM on October 6, 2004

Response by poster: tomierna: Thanks for that info - I'm seeing my MS nurse next week and I'll ask her about the drugs you've mentioned.

I've never heard about the thing about cold temps before - very interesting.

Also apologies for getting your username wrong earlier;
posted by selton at 2:58 PM on October 6, 2004

A friend of mine a long time ago found that ongoing stress was the worst trigger. She reorganized her life at a slower rhythm and felt a lot better.
posted by fuzz at 3:03 PM on October 6, 2004

The husband of one of my best friends has been diagnosed with MS...so I find myself reading any thread, any article, obsessively. However, all I know for sure that he is doing is interferon treatment. Of course, as above I am not a doctor, but the improvement he showed after starting the treatment was remarkable. I don't know what the long-term benefits have been as they moved to California and he doesn't like talking about his illness. I will be seeing him on Saturday, though, and so I could report back on how he's doing and what he's doing after that if you like.

I read an article in the Globe and Mail recently (I'm at work and so can't really search for it, but it was just this past week) and it suggested a diet extremely high in vitamin D. Apparently they are doing a major study on it soon. Paradoxically you are probably right to cut back on the dairy - I have read it is a trigger - but then you would need a ton of sunlight or supplements to help push the vitamin D levels back up, if that interests you. The kid in the article also cut out all eggs and gluten and a few other things, but that's pretty extreme.

Best of luck. And do let us know if you find anything amazing out - I'd like ot share it with my friend!
posted by livii at 7:19 AM on October 7, 2004

Response by poster: Fuzz:
Stress certainly is something I'm conscious of: and I'd say I've benefitted as my stress levels have reduced. My symptons became more apparent when I was stressed.

Livii:
I'll check up on the Vitamin D suggestion - again one I've never heard of.

Yes, I'd be interested to hear how your friend is getting on with his interferon treatment.

If I find out anything (or a combination of the excellent suggestions here) that really helps me I'll let you know also. Hmmm... I'll probably forget, but I'll certainly try to drop you an email.
posted by selton at 4:01 PM on October 7, 2004