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Old 04-03-2008, 08:44 AM
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lady_express_44 lady_express_44 is offline
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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Hi Frank,

As far as the headaches, I do think that there is something to that, particularly with regard to spinal lesions. We had a little bit of a brainstorming session on that idea in the attached thread:

http://neurotalk.psychcentral.com/sh...light=headache

When it comes to your drug of choice, it is my feeling that each of us is different in what might work for us as individuals. I also think you should wait about one year before you start contemplating a change, since the DMD drugs, including Tysabri, don't necessarily work right away. (Of course if we have a very bad reaction to the drug, it's probably not advisable to keep plodding along and hoping it will improve.)

Another thing is that apparently most of our obvious MRI activity (inflammation) tends to happen early on in the disease process, and then they believe that the process changes more towards neurodegeneration rather then inflammation. I believe that is the reason that so many people eventually appear to level off (somewhat) after a few years from their dx . . . perhaps combined with getting on a drug that works for them.

You've been on C for a couple of years now, and I would think that if it was working for you, you would be seeing a downward trend towards the number of attacks you are having. I think the "average" number of attacks is 1.5 every two years, but of course this is JUST an average. Still, if I were you, I would be looking to see if I am having far more then the average, when evaluating whether my current drug choice is "likely" to be "doin' what it should".

As far as this recent spinal cord activity, it is my personal experience that a high fever and/or infection seem to anger my spinal lesions. I don't find that so much with my brain lesions, but then again I don't really have a lot of experience with brain lesions anyway. If your 5 attacks have been "spinal lesion ones", it may be that the Copaxone is working in your brain, but the spinal inflammation is just reacting to infection, or doin' it's own thing for no particular reason. Spinal lesions are fickle.

After my first attack, which was initially experienced on both sides, it rendered me with mostly left-sided issues in the longer run. After that first spinal lesion attack though, there has been no rhyme or reason to which side is affected by an attack or damaged in the process.

Cherie
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