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Are there suggestions for living with pure autonmic failure (PAF)?
For 2.5 years I have been experiencing a constellation of symptoms. I am super grateful for the opportunity to visit Mayo Clinic's Neurology Department and to do the requiste tests (sweat test and autnomic reflex screen) needed to diagnos dysautonomias. My doctor suspects that I have the rather rare pure autonomic failure but apparently there is a chance that the problem could be amylodosis. I am doing a syn-one skin biopsy test to learn more. In the meantime, I am very interested in hear from others who have PAF and to learn about symptom management. Thank you.
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Sorry to hear about the diagnosis. I'm 68 and was diagnosed at 66. It took a while for them to figure out what was causing my symptoms. There does seem to be typical symptoms as well as more disparate symptoms and severity of the disease. My symptoms are dysautonomia, (feeling dizzy or faint upon standing from a sitting position). Lower energy, sensitivity to heat (feelings of sweating and being cold at the same time), weakness in legs going a set of stairs and then feeling light headed and out of breath. Digestion issues (I see a Neuro Gastrointestinal Dr.), and occasional bouts where I am walking and loose all energy and have to sit. I always have a protein bar with sugar in it to help if my energy is down. I do find some days better than others.
I take 18mg of Atomoxitine which is a ADHD medication used off label to help with PAF symptoms. Others use Midodrine and other medications. There are no meds specifically for PAF.
I think exercise is important and I go to a Functional Fitness trainer who works within my specific issues and really emphasizes balance. I also bicycle and never have symptoms while biking. One Dr. said it's due to sitting and the pumping action of my legs.
I also wear compression stockings which work just OK. I have ones that go up to my thighs.
You need to have a great Neurologist who specializes in Dysautonomia or is very familiar with this disease. Do you live in an area with these types of specialists? It can be hard to find these Doctors and even in Chicago there are only a couple who really work with PAF.
Thank you for your feedback, I really appreciate it. I am just looking for feedback from others that have it and I appreciate yours. Thanks again.
Thanks. That all does fit my symptoms. I also have pernicious anemia. I went to Mayo in Jacksonville and saw Dr Cheshire. Going back for tests.
Why is he thinking amylodosis?
Does PAF symptoms get worse over time?
I’m sure the Mayo has great Dr’s. Good luck on the test.