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Is there anyone else out there with pure autonomic system failure?

Brain & Nervous System | Last Active: Aug 8 3:27pm | Replies (49)
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@virginialutherhilman

I am delighted to receive your reply. I would like to compare our disorder and learn how you are coping with it. I am 80 years old and had such a time getting any kind of diagnosis until Mayo's put the blood pressure cuff on and had me record what I was doing at the time. I won't go in to too much detail this message. Please send me your questions. Thanks

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Replies to "I am delighted to receive your reply. I would like to compare our disorder and learn..."
rory922 | @rory922 | Aug 2 11:43am

I’m 80 yr old woman with PAF,
Pure Autonomic Failure, diagnosed 2 yrs ago by Mayo. If this is a current topic on Mayo Connect, I’d be very glad to compare notes on symptoms & coping. But at this point my first
need is this: No one knows what this neuro-degenerative disease is and it’s frustrating and tiring to explain, except to say my blood pressure plummets to 60/40s when I stand from sitting- or remain standing for more than 20mins. I’d appreciate hearing how others cope with explaining
this Nervous System Autonomic
Disorder. THANKS

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