multiple sclerosis treatments and advice

http://www.scienceblog.com/cms/node/7617 as adjunctive treatment for the symptomatic relief of neuropathic pain in adults with multiple sclerosis (MS). (http://sploid.com)

My partner has MS, and recently took part in a study to examine the effects of heavy duty muscle building work outs on the disease. It seemed to do some good, though I'm not sure of the exact details of the study, and this probably wouldn't help your mother. At the moment she takes Copaxone, which the Australian government covers the majority of the price (we only pay $28.00 per month for daily treatment) and does serious athletic training for 3 hours. Fortunately the progression has been slow.

MDN: If your mom is experiencing serious symptoms then, yes, I'm surprised she isn't on any palliative medications at all. But there could be things going on in the case that we don't know about and the doctors do. Still, lets look at tremors. Tremor can be disabling but there are various medications that can sometimes help. Tremor is actually one of the more difficult symptoms to treat, but you mentioned it specifically... Any of the following MAY help with the tremors: various strong anti-histamines, propranolol (a beta blocker), primidone (an anti-convulsant), acetazolamide (a diuretic), clonazepam or buspirone (anti-anxietics), and more. If your mom has a serious tremor, she might respond to one of those. Or she might not. I don't think its possible to say in advance. But as I said, my understanding is that serious tremor is a toughie to treat effectively. For other things... there are multiple drugs that can treat many or most symptoms of MS to a greater or (unfortunately) lesser degree. Spasticity, fatigue, dizziness, nystagmus, bladder dysfunction, and many others can be fairly effectively treated. Some people respond much better than others and it's impossible to say in advance who I'm not a doctor and you should really talk to them rather than me. But I hope I'm at least giving you some idea of the type of stuff that is out there. I don't want to give you false expectations though. There are probably drugs that can help with symptoms, but someone who develops MS in their 40's with fairly rapid progression is in a difficult position. I believe only something like 25% of people with MS are eventually confined to a wheelchair and most of those are so confined after 15 or 20 years, not 5. That's about as specific as I feel comfortable being when talking about a particular case. I have read a ton of literature and research journal articles about MS in general, but I am (again) not a doctor and you should talk to them about your particular concerns. But there are definitely questions you should be asking the doctor when you or your sister see him.

But these treatments are VERY expensive and without insurance probably prohibitive. Something like $12,000 a year just for the injections. That may be, I am sorry to say, why she never received them. Sorry again, just tring to share info. wow... no, please don't hold back information for fear of offending; I'd certainly much rather have a sense of things and I'm a pretty reasonable/practical type. That does make a lot of sense. Yet you said earlier that if she's not on meds something is wrong - are there less expensive treatments that you'd expect her to be getting? My mother does respond somewhat to cooling treatments, but taking a cold bath isn't something she can do continuously... but those suits look kind of interesting, and the advice about refrigerated bandanas is good. Thanks for all the links above. So, to recap, - steroids can help alleviate symptoms but only briefly and generally only for relapsing/remitting; - interferon treatments definitely slow progression but are extremely expensive; - mitoxantrone can slow progression but might be dangerous for the heart. are there other groups of medications I should be aware of (& the pluses & minuses that come with them)? I know there's no cure, but I want to be aware of as many potential angles as possible.

http://www.nationalmssociety.org/Research-2005Feb28.asp is instructive about the two deaths in the Tysabri combination trial.

In addition to the great information other posters are giving about drug therapies: Some MS patients find that cold can help palliate symptoms. Cold packs, cool baths and showers, and cooling suits are all methods that I know people sometimes find useful. http://www.msaa.com/publications/cooling/contents.htm is a little bit of discussion about cooling and MS. You might want to bring this up as a secondary, supplementary, non-drug therapy option with your mother and her doctor.

She's in Britain and so presumably covered by NHS, but NHS provides interferons in only a limited trial way AFAICT, and that only recently. She could talk to her physician about getting into the program; it's tentatively approved for secondary progressive.

MDN: Steroids are really only pallitave. They generally shorten the duration of relapses in relapsing-remitting MS, which makes the patient more comfortable. But they do not delay disease progression and would not have mattered much in the long term. But if your mother was diagnosed with relapsing-remitting MS, the most effective treatment would have been Avonex or Rebif which are beta interferons. They have been clinically proven to make a difference. I want to be clear that these are NOT a cure. But they do help prevent some relapses and may delay progressive disease. But these treatments are VERY expensive and without insurance probably prohibitive. Something like $12,000 a year just for the injections. That may be, I am sorry to say, why she never received them. Sorry again, just tring to share info.

She had had symptoms for at least a few years by then, though... I should say, some people then began retroactively categorizing previous behavior as symptomatic, e.g., my dad started saying, oh yes, I knew something was wrong around the time she turned 30... but it is unclear if this is really based on anything or not (my parents divorced when my mom was about 40). I can't tell, not least because I was just a kid at the time.