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.

Hi Uncle Dave, thanks for your reply. I'm sorry to hear you have so much pain when you walk. It sounds like Mestinon is a good drug for you, thankfully, but it sounds like you still have a lot of limits.

Hi 4-eyes, that is interesting about "velocity-dependent spasticity." Gosh, it's been forever since I tried running, probably not since I last tried to catch a bus! I do know I couldn't get far that way, either. Maybe there is something to that, because certainly if I walk more slowly, I "last" longer.

The PT did test my knee and ankle reflexes but got no response whatsoever (as far as I could tell), and neurologists and the orthopedist tested them years ago--my reflexes are always very low or even nonexistent. (Which doesn't fit with MS... I don't think.) My PT is in the same system as my PCP, so he will see in his computer whatever she wrote about her assessment.

Re polymyositis, Lyme disease, etc.: as you might guess, I have indeed looked at a lot of links and websites over the years, but there doesn't seem to be anything that really fits well--although MS would explain a heck of a lot, and certainly I have a couple of red-flag symptoms for it. (And the first neurologist essentially told me I had it, before backtracking.) But the docs don't pay that much attention to symptoms--it's all about the MRI. And unfortunately I haven't been able to get a successful spinal tap. I did have a very abnormal brainstem test (evoked responses), but that too is nonspecific, like the MRI "spots."

Yes, I guess I "know my way around the system"--now if only I could FINALLY succeed in getting the system to work for me--that is, having a well-considered and up-to-date evaluation without being looked at with prejudice from the start just because I have a confusing history and symptoms and have already had some testing.

I'm not terribly hopeful, but I AM by now COMPLETELY out of patience with getting the "don't know, don't care, goodbye" attitude and/or the "well, you've had MRIs, you've had exams, nothing specific was found, so it's just a mind-body thing" or "nothing was found on MRI, so nothing can be done!" (the constant refrain of the last neuro, the dumb one)--I am not going to take that meekly anymore, as I've done for the past 14 years. I am old and feel I've earned the right to be grouchy about not being able to just take a little walk!

4-eyes, thank you again VERY much for your thoughts and your encouragement. I appreciate them very much. And thank you very much to everyone who replied!

Best wishes and good luck to everyone.