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Are there suggestions for living with pure autonmic failure (PAF)?
Brain & Nervous System | Last Active: Sep 11 9:55pm | Replies (34)Comment receiving replies
After many years of dealing with symptoms, primarily severe orthostatic hypotension, I did the syn one biopsy test. It confirmed Pure Autonomic Failure. I do have other symptoms as well, it’s just the BP crashing many times a day that has altered my life. What symptoms are you experiencing?
Replies to "After many years of dealing with symptoms, primarily severe orthostatic hypotension, I did the syn one..."
Are you able to work or is PAF (Pure Autonomic Failure) too disabling?
Has anyone experienced progressing from Pure Autonomic Failure to Multiple Systems Atrophy?
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@marcwp I have done the syn-one and it came back normal. My Qsart showed normal in arm, but low sweat in legs and foot. I have urinary, temp regulation problems, bowel, insomnia, tremor, restless legs, stiff and sore hands, low back pain, weak legs, orthostatic hypotension at times, but I passed the Tilt Table Test. I don’t think I have PAF. Do you have postprandial hypotension where your b/p drops after eating. I have that and it’s significant. How did they know from Syn-One it was PAF? My only dx at this point is dysautonomia and idiopathic autonomic neuropathy. I am so sorry you have this, I know it limits your life unbelievably. Any words of hope for improvement by your doctor. Keep hope alive. 🙏