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Shy Drager or Pure Autonomic Failure ?
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Shy Drager or Pure Autonomic Failure ?

I was diagnosed with autonomic dysfunction approximatly 2 years ago after many tests to rule out heart problems. My problem now is all of the symptoms are getting worse. My bowels have shut down and because of the severe constipation 80% of my bowel was removed. It did not do any good, so now the rest will be removed. Most days I can not walk right, it seems like my legs dont know what to do, and because of my stumbling around I have had to have knee surgery to repair the damage that was done. There are not enough lines to put all of my symptoms here. I saw a Neurologist a little over a year ago and he thought that it was pure autonomic failure, and I went to Vanderbilt Hospital for one of their researches, and since my autonomic system had not shut down they were not really any help. I know that it would be an educated guess, but how do I tell if it is Shy-Drager or PAF ? Most of my symptoms are leading towards Shy-Drager, but I am hoping that I have missed something in my research. I am planning to see the Neurologist in my hometown, but I have to get past these surgeries and it takes 6 months to get an appointment with him, and this has been waying heavy on my mind. Until all of this started I was a very healthy active person who had not even had a cold in 20 years and now I am middle aged and I am disabled. I hope that you can give me just a little advice. Thank You Mrs. Glass
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Avatar_f_tn
hi.
I am not sure if you knnew this area is the patien to patiennt forum. Not doctors answewr here.
Shy Dragger falls under the newer label of MSA (multiple system atrophy)
I amm dx'd  probablee MSC-c (previous OPCA label, . There  are good     web sites    you and read for diagnstiic critiera.
To be  MSA, all thre areeas need to show.... cerebellar, parkinson's , and autonomic.
I am glad you will see your docotor, but It is not easy to dx... even top doctors in the field can have diffiicult.
MOvement disorder specialist are who many with msa see because of the ataxia and parkinson s.
i wish youu luck, amo
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Avatar_n_tn
Mrs. Glass,

I also have autonomic neuropathy (severe gastroparesis and hypohidrosis), though mine is probably autoimmune in nature.  Don't know if yours is or not?  Did doctors mention autoimmune to you at all?

I understand your concern about the dreaded multi-system atrophy/Shy Drager.  I also had a question about that initially and got scared I might have that and so started reading on it, and I think (but am not 100% positive) that since it is a central nervous system disease there would be changes on MRI of the brain.  If you have had a normal brain MRI then I think (but am not positive) that can be ruled out.  Also, there are usually Parkison-type symptoms/movement disorder associated with MSA/Shy-Drager as the above poster mentioned.  So if you have had a negative brain MRI and have no Parkinson/movement disorder symptoms, you probabably do not have Shy Drager syndrome and instead have pure/primary autonomic failure of some kind.  I am sorry about the shutting down of your bowels.  If you are still on this board, how long have you had autonomic neuropathy and what are your other symptoms?  
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