fudge stripe cookays
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Sat Apr-12-08 07:10 AM
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Aaah, a new symptom. Involving PAIN this time. |
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I've been SO incredibly lucky the last 3 years in dealing with my MS. The symptoms (mostly the Lhermitte's sign in my neck and basic fatigue) are a nusiance, but not critical. I even got a new doctor up here who put me on a drug used to trerat narcolepsy that helps with the exhaustion. I call them my "happy pills" because they work so wonderfully!
The other day, a new symptom decided to present itself, and last night was agony for an hour or two. Stabbing pains under my thumb, causing my hands to jerk and spasm around. It felt like someone was taking a large pin, driving it through my thumb, and butting it up against the underside of my thumbnail. Almost like an electric shock, too.
Aaaaah multiple sclerosis.
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blondie58
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Sat Apr-12-08 10:12 PM
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1. I am so sorry, fudge stripe cookays |
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and I certainly hope that it is just a temporary symptom. I don't think that I've ever suffered from pain with it either, although I had some suspicions at one time.
Is that other drug provigil? If so, more power to you. I took it for awhile and was quite happy with the results. Sometimes even a half a pill did the trick. However, my insurance company, looking out for the company of course :sarcasm: changed it so that it was only valid for people diagnosed with narcolepsy, as the FDA had approved it for narcolepsy patients. So now, it is back to major doses of java, which works ok, although it does make me have to pee far too often. Are you going to do the MS walk in your area when they have it? I do it with my daughter and some friends, although last year was the first year that I didn't walk it. I get really 'gimpy' whenever I walk for too far, so I just helped out at the finish line.
Anyway, good luck with your new and hopefully short symptom.
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fudge stripe cookays
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Sun Apr-13-08 09:47 AM
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Yes, Provigil has changed my life. I'm so angry that my doctor in Dallas didn't know about it, and if she did, didn't recommend it to me.
There are several genealogy trips I've taken where I could have accomplished SO much more if I'd been taking it at the time. Monterey, California, in particular, because there was so much wonderful stuff to see and do!
I'm going to keep my fingers crossed that my insurance doesn't pull that crap. We're getting ready to do a changeover to a company-owned plan, so if they do disallow it, I'll phrase it so the company can understand it, and make them realize that my productivity will go down if I can't take it.
No, probably won't do the MS walk. Distances tend to be harder for me, although the climate up here is a little better and cooler. I did it back in 1992 before I got sick, and felt great about it. I'm usually working so hard on my book that I don't have much time for anything else anymore!
:hug:
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blondie58
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Sun Apr-13-08 10:23 AM
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3. I am going to contact the pharmaceutical giant that produces |
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Provigil and recommend that they work on getting it approved for more conditions. I see on their website that it is now approved for people who suffer from sleep apnea and also shift work sleep disorder. They could sell so much more of their product if they got it approved for MS. The fatigue that we can feel is unlike any fatigue that I've ever felt before- to the bone tired.
Maybe I should check into Ritalin or something else. I don't really like taking all of these drugs, but I am so tired, way too often.
I am so glad that it is working for you, though. Maybe you should try and stockpile some, in case they change? I know that it is an expensive drug, but it works. It is a drug that was used on the Navy pilots to keep them alert during exercises. My Rebif is expensive, too, let's hope they never disallow that.
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fudge stripe cookays
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Sun Apr-13-08 12:21 PM
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Used to be, even a trip to the grocery store would have me dragging within 15 minutes. Forget the multi-errand Saturdays I used to be able to do. I'd have to save up all my energy for 1 thing, and I'd be bagged after two aisles.
Now, I can do everything I used to do. Multiple errands, longer shopping trips, and I can actually go to the mall and window shop like I used to do with no time or energy limit. Just casual stuff for anyone else, but it had become an impossibility for me.
I've actually noticed a bit of residual effect too. I don't take mine every day now. I save it only for days when I KNOW I'll need to do a lot, because it's so expensive. But it seems to give me energy for several days afterward (not LOADS, but enough to keep me productive at work...that sort of thing).
If I need to do major housecleaning, or if I'm having a dinner party that requires lots of shopping and cooking, one pill mid morning keeps me going like the Energizer Bunny all day.
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Mojorabbit
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Sat Apr-26-08 07:43 PM
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to try and it just made me edgy. Same with the provigil. Sigh.
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Mojorabbit
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Sat Apr-26-08 07:46 PM
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you are in pain. Mine is in my legs and can be excruciating. But all in all I am in good shape 23 years after dx. I hope the pain will be an infrequent sx. :hug:
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