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Tuesday, July 13

MiSdiagnosis

I've wondered in the past if the doctors made a mistake and i really don't have MS.  Of course, after I have those thoughts, i think well there has GOT to be some kinda explanation for the things that have been happening.  I can probably explain away the falls as my being a klutz, but everything else?  not so much.  Also, the only symptom (Y can't i spell this word on the 1st try???) that I experience is walking problems (i'm not complaining, really I'm not but it always makes me wonder).

People have been asking me recently if the new meds are working.  I knew without a doubt that the Ampyra made a tremendous difference - no question.  Have i seen a difference now that I'm also taking Tysabri?  I really can't say for sure.  I mentioned before that the Tysabri at first appeared to be negating what the Ampyra did.  That wasn't an EXACT statement, in that before taking the Ampyra, my feet/ankles (that region) were very weak...started taking the Ampyra and that was improved and now, I no longer drag my feet but after I started taking Tysabri and i stay upright for too long, my knees start locking up...WTF??!?!?  Is that the MS or something else?  Is it that the muscles that normally keep that from happening are weak?  what the fcuk is it?  Now, i will admit that it is not as bad as the first weekend after the 1st Tysabri infusion but still...

so to go along with those thoughts of a misdiagnosis, I also wonder if I'm taking all these meds for nothing.  Are they making a difference?  Shit - hell if I know! i guess...I hope...but i really can't bet my life on it! 

3 comments:

  1. It can definitely be frustrating!! When I was getting ready to start Tysabri, my doctors warned me that it could take a good 6 months before I could notice any positive effects of Tysabri. Also, it could be that I wouldn't notice the effects per se, but that it would be making a different in disease progression. (That's how the Avonex was for me-- I didn't really notice what it was or wasn't doing for me-- but my MRI's showed it.)

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  2. I'm taking Tysabri and Ampyra, too. The positive impact of Ampyra has been quite astounding. Not sure if Tysabri is also contributing, but I sure like monthly infusions as opposed to weekly injections of Avonex!!

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  3. U're right...i don't miss the daily Copaxone shot at all!

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