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11-17-2008, 09:14 PM
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Ok..Dont know how many know my history. I had MS DX for awhile..benign case no DMDs in 2005. Then his PA says NO you do not..MS but there IS something neurological going on.. and it may be seizures along with my brain atrophy. THen MS doc says I never say NO Ms..hmm...what to do.. what to do. He refers me to another neuro in his office to rule out seizures. This neuro says no seizures..but sleep apnea and a rare form of narcolepsy..but doesnt get to finish his evals as my job changed.
I DO have some kind of autonomic problem that all are concerned about but have been mistreated at ERs and dismissed without any help. My job changed so my insurance changed...another hunt for all new docs. My MS doc said in 6/08 before I changed that NO you do not have MS... ok. Now I see this D.O. doc as my primary..she listens to my complicated hx and says.. "Are they sure you dont have MS??" Then later adds.. "Are they sure you dont have seizures??" Because her OWN mother has an odd neuro muscular disorder that no one knows what to do.. she found an excellent Neuro at a hosp here and is referring me to him.. WHEN I am ready.. IF I want to!! ( I told her I swore off docs this year). She affirmed my frustration and years of seeing specialists..2 neuros..2 rheumatologist all with diff opinions. This new neuro specializes in autnomic problems which all agree I have.. and neuro muscular problems.. which I have terrible spasticity and neuropathy that is getting worse. Its so nice to be listened to..to ask ME permission when and how I want to proceed and believes there IS something wrong without dimissing me with RXs. There IS hope.. now isnt' there?? Smiling.. Jan
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