Anyone have pure autonomic failure? I was just diagnosed at Rochester

I was diagnosed with Primary Autonomic Nervous System Failure in 2025. Primary vs Pure because Pure is limited to the peripheral nervous system and Primary has some brain involvement too. The initial brain involvement was having REM Sleep Behavior Disorder for years before the symptoms of PANF showed up - or were recognized. A certain % of PANF patients progress to brain involvement over time with Parkinson's, Multiple System Failure or Lewy Body Dementia. Would be interested to hear what symptoms you have that prompted your neurologist to diagnose you. You are not alone.

@sdinus
I have been diagnosed with Autonomic Dysfunction, as well as many others. I did the tilt table, and my heart rate increased over 30 bpm, so I have the POTS diagnosis too. I am seeing an Autonomic Neurologist on May 1st. My BP has been out of control since a box fell on the back of my head (plus 30 years ago, I was in a motor vehicle accident that put me in a two-week coma). From my understanding, it is hard to get into and see an Autonomic Neurologist quickly. Good luck with all!

@foundryrat743

I've noticed the same thing. I feel like I get a pat on the head and a "there, there" just because I'm 76. I still can think, read and research. Is it because they're thinking "Oh well. She's old and will probably pass away soon anyway." I am disgusted with my because of this. I have to drag all answers I need out of her.

@janeilene I’ve decided that perhaps, I need to have a geriatrics physician, as my primary care provider, because, I’ve gotten nowhere with the DO, family doctor, that I have assigned to me, at a clinic, where a secretary sets up a Medicare Wellness visit once a year,’where I’m lucky to see my Doctor for sbout 10 minutes! I had lacunar stroke symptoms, Chronic Inflammatory Demyelinating Polyneuropathy symptoms for 2 years, or so, and didn’t know it, because I’m not a medical person, and had no idea. When I tried to discuss symptoms that were, or had been bothering me, like the loss of balance, falling, walking and tingling/numbness in my feet in hands, that was getting worse, neither my neurologist, nor primary care provider, addressed those issues, and had a wait and see attitude. My primary care provider was so rushed for time, this year, where his patient visits, are timed by the administration, that he only had time to check my breathing with a stethoscope. There was no time to discuss any symptoms that I was having. Anyway, my neurologist retired last year, and my new neurologist is doing a great job, in helping me figure out all the problems that I have been having lately! Thanks for your support!

The one suggestion I have is get in to see a Neurologist who specializes in Movement Disorders - even if you have to travel to see one. These neurodegenerative diseases are not recognized or dealt with by many overworked clinicians and despite their concern for you they have limited ability to diagnose and treat these disorders. Good Luck to you.

@janeilene
I am sorry for what you are going through. I completely understand. It is the entire way the medical world is set up. I went through this with two primary doctors telling me I have a concussion and everything is normal. I was given the wait-and-see order. After seeing the third one, I finally got a General Neurology referral because of my severe TBI with a two-week coma history.

I was hopeful when seeing all of these specialists, but I had to advocate big time for myself because I was being treated like a cow, herded through the system. I understand medical providers have a list to follow through with patients that come in, and it works for 80% of the population. The disappointing fact is that for the 20% that it doesn't work for, they are told it is anxiety, etc.....

I am currently seeing the right specialists, but feel like no one is actually listening to me or looking at me as an individual, a complex case where normal procedures don't work. Mayo Clinic in Rochester is supposed to be the #1 rated in the world for neurology. I know if I had gone elsewhere, it would have been worse. All I can say is don't lose hope because I am hoping my particular case will help to change the system.

If you ever need someone to talk to, I am here.

Thank you so very much. I know others also feel this frustration with the "let's just wait and see" approach when maybe we don't have the time to wait. It's good to know I can talk with you. Thank You.

I was diagnosed with dysautonomia a year and a half ago. Since then, they have narrowed down to PAF. They also found I have a copper deficiency with is rare. They are doing a genetic test on me. Some days are good and some or bad. Neuromuscular doctor told me basically support care.