seeing a neuroligist tomorrow.

[crackers]

well i got the appointment for dr. leckeys clinic at the neuro centre and it's 9 am in the morning(monday).can't say i'm optimistic of anything positive coming from this. i got the feeling my rheumy was grasping at straws a little bit when she suggested this but who knows, i could be wrong.
john

[Sangye]

Sometimes straws lead to good things. When I was in the hospital a few weeks ago with GI bleeding, a physical therapist stopped by to evaluate me and see if I needed anything. She was astonished at my level of deconditioning due to the drugs, disease and lack of activity for over 3 years. I keep trying to explain to the docs why I can't do much-- she totally got it and talked me into starting physical therapy in the next few weeks. So that was the last thing I expected to come out of a hospitalization for GI bleeding!

Just go and see what this guy has to say, John. If it goes nowhere, then at least you know. Maybe he can recommend a better rheumy-- worth asking.

[crackers]

just as i expected, a waste of time.the doc said "well it's not muscular" and that was that.he wants me to do another electrical test where they zap your muscles but apart from that nothing.
john

[Sangye]

As frustrating as it is to have a test come back negative, it is a good thing that it isn't muscular. You wouldn't want anything on that list....

So this narrows the options, which is a good thing. Makes it more likely to figure it out. The procedure he wants tests the nerves that go to particular muscles. Did he seem confident that you needed the test, or like "Well, I can't think of anything else...." If he seemed uncertain, see a neurologist first. They can tell if you really need it (not that hard to tell). There are two types of nerve tests and one is highly unpleasant. I wouldn't want you to go through that for nothing. Even the milder test-- takes energy to get there, etc...

[crackers]

sangye already had both those tests last november and one of them is very uncomfortable indeed.unless they can convince me otherwise i may well cancel the tests.he didn't have my notes there to see my previous history which didn't help.i know it's not a muscular problem,the muscles are affected but are not the problem.
john