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Are there suggestions for living with pure autonmic failure (PAF)?

Posted by sjhalvorson @sjhalvorson, Dec 20, 2024

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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babyboxcat | @babyboxcat | Apr 27 9:39am
In reply to @bmfoster "@babyboxcat You point out a common and complicating problem with neurodegenerative diseases - they look like..." + (show)
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@babyboxcat
You point out a common and complicating problem with neurodegenerative diseases - they look like "normal aging" for a long time and hence the diagnosis is delayed for years. The fear of the unknown can be crippling, but also such a waste of energy and peace of mind when things don't go as feared. I try to live one day at a time and try to stay active to avoid dwelling too much on what "might happen". My husband and I have discussed long term options and have a general plan - then we go on to live life the best that we can. We considered referral to one of the big neuro disease centers, but the thought of long travel times on a regular basis seemed quite daunting. I see a local neurologist who specializes in Movement Disorders and remain an advocate for myself by keeping up with reading and communicating with others who treat and experience the same disorders. I'm OK today - and try to focus on that.

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@bmfoster
Thanks so much for your thoughtful comments. It really helps to communicate with people that are going through the same thing. My husband has Frontotemporal Dementia behavioral variant - a horrible disease where the patient basically changes personality and affect, while losing the ability to reason. My husband of 52 years was a wonderful man but is now very mean and irrational. I haven't told my siblings or my son about the PAF because I tend to be the centrl support of the family and I don't want them to worry about me. That said, I know I will feel better if I have some sort of a plan going forward. I also appreciate the comment about finding a local neurologist instead of traveling. Unfortunately, I didn't particularly like the neurologist that made the diagnosis, which is why I am looking for another one. I will try to stay positive and focus on the fact that currently I'm doing quite well.

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bunstuffer | @bunstuffer | Apr 27 2:50pm
In reply to @seniormed "I suggest Mayo Rochester. The autonomic team there is excellent with ongoing studies and experience with..." + (show)
Profile picture for seniormed @seniormed

I suggest Mayo Rochester. The autonomic team there is excellent with ongoing studies and experience with many clinicians having published
articles dealing with follow up and prognosis. I had a very thorough workup and consultation done within a week. I’m enrolled in speech pathology
study regarding neurological change over time. Nobody can predict our
trajectory in our late 70s. I am doing well with a good team of doctors.

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@seniormed
Good luck getting accepted at Mayo Rochester!

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