faithinspires Posted January 28, 2006 Report Share Posted January 28, 2006 I have not posted in quite some time, as I have been very ill. All meds are failing. I have however been keeping up with reading the posts. I relate to everyone's struggles & victories! I really enjoy the humor everyone in this group has!After another 6 months of failing to respond to medications, adverse reactions, & baffling the doctors; I am now finally getting somewhere. They referred me to a neurologist or who referred me to another one.There I had autonomic emg testing. They repeated TTT, did Valsalva manuever; breathing tests, did axon q-start reflex testing, & thermo regulatory sweat testing. The first neurologist also did further EMG tests with the needles in addition to a different kind of shock test.The response by one neurologist is that I failed the Valsalva, TTT, Axon Qstarts, & thermal regulatory sweat tests severely. There were severe, complex abnormalities with all organ systems involved. And that I have significant autonomic nervous system dysfunction.The response of the other neurologist said that I have early post ganglioc sudomotor dysfunction, vasomotor adregenic dysfunction, and hereditary autonomic sensory neuropathy. Both neurologists, & my EP cardiologist have all stated that this is beyond their expertise as far as NCS/POTS goes. The conscensus of opinion is referral to Dr. Phillip Low at Mayo in Rochester. They have spoke with him on the phone & faxed my tests; dr's notes per his request; so that he can review them & let me know when he will see me. Its a drive & expense their for me...but more than willing to go. (I took my doctor their for some of her testing related to NCS & POTS.I do not know exactly what this all means, so if anyone has any input on any of it, I would appreciate it. I am glad that at least things are beginning to show on tests, that I am getting more specific answers, & hopefully more specific treatment.I can't change this, so I have decided that I just want to know exactly what I have, what it means, & get on with living & making whatever necessary accomadotions that I need to make.Enjoying the things I can in life with a new found apprecitation!Take Care & Hi to all! Renee Quote Link to comment Share on other sites More sharing options...
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