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.