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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
I have urinary, ED, weakness at times, loss of sense of smell,
lack of sweating, sometimes restless leg, difficulties at altitude, and severe orthostatic hypotension. Any autonomic function will make my BP crash (need to urinate, digesting food, getting up, walking up an incline or stairs, sudden movement like a dog on a leash bolting for a squirrel). Heat is not my friend as I abnormally sweat. The results of the Syn One were represented as a picture and it was explained to me that the patterns of the picture differentiated between PAF, Parkinson’s or Lewy Bodies Dementia.
At this point we manage the BP crashes with a combination of Droxidopa (Northera), Midodrine, Strattera and vitamin B12. For the most part I can walk the dogs. The one thing that I do really well at with no symptoms is swimming (we think it is the temp of the water)
I failed Tilt Table spectacularly (my doctor’s words, I went out in 20 seconds). Sweat test showed sweat on my left side and not right divided by a straight line down my torso and at 125° - nothing at 115°.
Good luck to you, this stuff isn’t fun.
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I had the Qsart sweat test. Sounds like you had the full body in a device to make you sweat with the powder. My Qsart showed normal in arm and low in legs and foot. Frankly, I still do not understand it all. Have not seen the doctor, so I’ve only been told I have autonomic neuropathy. I have terrible insomnia, daytime grogginess, sleep apnea and wake up with dreams and recall. I really have been thinking it’s MSA with the tremor and the restless legs. My life the past year has been miserable. Oddly, I had a tilt table test at Mayo in 2008 that showed orthostatic intolerance, but the Qsart and the rest of the tests were fine. I imagine what ever is going on it’s been working on me since then. I like to understand, and these medical problems seem to have few answers if any. Thanks for sharing, I’m 72 so not young onset here (unless you count the 2008 test).