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Old 06-08-2013, 05:32 PM #9
4-eyes 4-eyes is offline
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4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
15 yr Member
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Nancy,

That is interesting, and confusing--as you know. I still think the possibility of "velocity dependent" spasticity could be playing a role. In other words, the more you work a muscle, or the faster you try to go, the more the spasticity will present. Have you tried running? It might present stronger if you try running a short distance (but only if you feel it's safe to do so.)

Since you are seeing a PT, ask him/her to do some quick reflex tests and tests for spasticity. That might give you a starting point. Also, ask your therapist to write a little note for the next doctor, or give you a copy of your initial evaluation to take to the doctor.

Have you explored the possibility of other things like polymyositis, transverse myelitis or even Lyme disease? I remember a few years back that there was a forum member who was just so SURE she had MG, only to find she had Lyme disease.

Sounds like you know your way around "the system." Now all you need is a match with a good doctor who loves a challenge!

Take care.
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