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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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@rory922

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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Replies to "I’m 80 yr old woman with PAF, Pure Autonomic Failure, diagnosed 2 yrs ago by Mayo...."
jeangreer | @jeangreer | Aug 6 8:52am

Thank you for your reply. Will stay in touch. The respiration is the worst. I wear myself out from shortness of breath. The only time I don’t have it is when I’m sleeping. Also loss of balance. Faulty equilibrium. Fatigue. Enervated and unmotivated 90% of the time .

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