Quote:
Originally Posted by Sheltiemom
Hi, Hermes -
As you say, even one of if not the best facility in the country hasn't been able to come up with a Dx for you.
Where is the program Mystery Diagnosis when we need them? Now wish I'd written down the causes of some of the diseases that program has presented. Stuff nobody would think of - but some docs did.
For whatever it might be worth - did JH do autonomic nervous system testing on you? Did they test for things like Guillain-Barre (not sure of spelling), Charcot-Marie-Tooth, hereditary neuropathies, etc.? Would think so. If not, though, you might ask if they are possibilities.
Good luck at your appointment, and try to hang in there. If you feel you're getting worse, though, don't hesitate to call and see if you can be fit into the schedule really soon.
Sheltiemom
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I have had some autonomic symptoms - my neurologist sent me to a cardiologist for a tilt table test but he wouldn't do it. Says noone does anymore and insurance won't pay for it. If the problem - blood pressure drop when I stand (light headiness) gets worse I'm supposed to come back and he'll put me on some meds to see if it helps.
The guy I saw at JH specialized in MS and and transverse myelitis. Those were ruled out. I think he ordered test for all the other stuff also.