As I’ve mentioned on the board in the past, I’ve got multiple sclerosis.
I was originally on Copaxone, but after a hideous anaphalatic shock type reaction, I’ve been on Avonex.
Now I’ve read up on the new drug, Rebif, as well as bee venom therapy, and my grandmother’s idea of Prokarin.
Does anyone else on here have MS, and what are you doing to manage the symptoms?
In the Netherlands we have the “Cannabis for medicine”-support group. Although I don’t suffer from MS, I know a lot of people who are helped by smoking pot on a regular basis. It is also given to people who suffer from nausea after chemical treatment of cancer and aids. It is supposed to do wonders.
In most parts of the world this is illegal, so you should probably check your local legislation and see if you can find a support group to see if this is an option.
My girlfriend does. She has refused to go on any of the “ABC” drugs–she says the evidence of their efficacy is more anecdotal than statistically proven, and that the side effects are horrid. Fortunately her MRIs show her remaining in remission with very slow spread of plaque areas.
One thing she has found is that people with one autoimmune disease often suffer from another as well, and some of the others are more treatable than MS. It’s worth checking for lupus and RA and hashimoto’s and scleroderma and treating whatever symptoms are treatable.
In Oregon, we have the medical marijuana law, but aws long as Ashcroft is still going to prosecute it as a federal crime, I’m not taking that chance.
The efficacy of the beta drugs is far more than anectodal. I read reports all over the net and from other who are on them. The statistical quality of the data is not poor, and comparing the control groups versus the trial group one does see a difference.
Thing is, the price of Avonex and Copaxone is HUGE. Both are better than $850 per month.
I am losing more and more motor ability, and even with the large drug colada I am on, I’m not really getting any better.
I guess that right now I am looking for light at the end of the tunnel, and am praying that it doesn’t turn out to be an oncoming train.
I was diagnosed with relapsing/remitting MS in November. I don’t take any of the currently prescribed meds for it- price is one huge reason, side effects are another, and also I went so long undiagnosed that I’ve learned to adapt without meds. I also have fibromyalgia… they had me on Zoloft for that (as well as the clinical depression I suffer from) and it helps a good bit. I take vitamins- primarily magnesium and potassium- as well.
There’s a legal, herbal alternative to marijuana, available in a lot of herb shops, that I indulge in when things get really bad. Email me if you want more info on that.
-BK
My mother has MS and has for years. She’s not taking anything because nothing works all that well for her, and from a cost-benefit analysis, what little improvement she’s had isn’t worth the side effects.
She’s hired an aide part-time to help out during my last trimester and after I’ve delivered, because I can’t take care of her, myself, and the baby. Sucks, but that’s life in the big city.
Robin
Ok. I’m not sure if I should ask this. I know most of us are not doctors here so I won’t hold anybody responsible for what they say. Since I’ve had my baby, I’e been having numbness and tingling in my hands. At first, I had a terrible pain in my neck so I figured it was just a pinched nerve or something. now, my neck is fine but my hands still go numb or tingly. I asked the dr. about it last week when i was there (strep test) and she said it may be caused by the stress of going back to work after having my baby. "If it doen’t stop once school’s out, call. OK, fine and dandy. Then, yesterday, my SPINE was tingling (no, I was not in that B-Horror flick THE SPINE!!! . So, I did a Google search and the first site to come up was the MS Society. Another site, can’t remember which one, says that if one has MS (sort of dormant-like), having a baby can trigger and episode. I’m pretty wigged. Any thoughts on this? Anything would be helpful whether it’s “Get thee to the doctor” or “Stop assuming the worst.” Thanks, folks. I don’t know any other place I’d feel comfy asking…
mmm…
Well, I’ll start by saying “stop assuming the worst.” And I’ll go on to say that the movie you’re thinking of is The Tingler. 
Yes, the stress of carrying and delivering a baby can trigger MS… in fact, most sufferers can recall exactly what triggered their first round of symptoms (me, a really severe case of strep in April of 1998). But while numbness and tingling can be symptoms of MS, having those symptoms alone doesn’t mean you do have it. There are a number of other symptoms- dizziness, fatigue, mental confusion, muscle weakness- that are typically present, ones that you aren’t claiming to have. I’ll use myself as an example… sure I had numbness, but within a month Mr. Kitty wouldn’t allow me to handle anything breakable because I simply couldn’t tell if I was holding it or not. What finally got me to the doctor was the fact that when I would drive places I would have no recollection at all of how I got there, whether I obeyed traffic laws, whether I ran over a bunch of school children on the way, etc.
What you’re describing does sound more like a pinched nerve. Remember that the body can only convey pain impulses for so long before it overloads. The damaged muscles and nerves compensate, but the outlying symptoms remain. Hence, your neck will feel fine, but you’ll still exhibit symptoms of a pinched nerve. That is, of course, a totally low-rent explanation of what happens, but your doctor will be able to do a much better job.
Well, I just saw the new neurologist today for the first time. After hearing from me what has been going on, she prescribed xanax and provigil. Yummy. More drugs. :rolleyes:
Is this all they can do? Is it all just a big pharmecutical showcase where I feel like Neely O’Hara, being taken through a drug wonderland? BLEH.
Bobkitty, thanks so much. You really made me feel better about both my tingling/numbness and my lack of useless knowledge about b-grade movies. I do experience fatigue and mental confusion but I chalk that up to the sleep-deprived state of “New Motherhood (like New York and New Jersey only better. sounds like a real state, huh? maybe we need a department of tourism so people will come visit.).” But, I don’t feel anything to the extent that you describe. I’m very sorry for your condition. I hope you are getting the best care possible.
I also beg forgiveness for the parentheses and quotes that I opened in the previous post but never closed. I hate that! here, I will close them now: )" 
mmm…