I guess I feel blown off because he had the nurse call and didn't call me back personally. Then she says she can answer my questions, but then fails to answer them. I got a lot of "I don't know, you'll have to ask him" and "maybe you'd better schedule an appt to go over this with him". So that made her initial statement that she can answer all my questions pretty absurd.

Good advice about taking the emotion out of it. I tend to be pretty nervous at neuro appts and I just have to learn to take charge of what I need. I will look at that list for people in Pittsburgh, too.


So, can MS really mimic this? Since I do have lesions, that is pretty interesting. I am definitely going to ask my neuro (he is an MS specialist neuro) if I can just attribute this to the MS. I try really hard to not just blame everything on MS, though. I really thought this was from when I fell a few years ago and injured my shoulder (doc said it was a sprain, but the PT said it was more likely a small tear).

I get frustrated because nothing about me is textbook. I seem to have a way of just being atypical. Even the MS. I have lesions, but I am missing the more typical ones. People tend to get lesions in the periventricular area first, but I don't have any there yet. I have a bunch (more than 12) in the subcortical area (from what I've been told MS patients get them there later). So, the neuro calls me "atypical MS" or CNS Demyelinating disease.

You are so right that we deserve a lot of credit for dealing with everything and keeping on. It's hard to live with stuff that can't be fixed. You guys are really awesome.

I am going to get some lunch and head out pretty soon for a massage. I'm hoping that helps something. I know it will help with the spasticity - I can usually decrease my Baclofen for a week or so after a good Swedish massage. So, if the shoulder is from the spasticity, it should improve.