Pure autonomic failure just diagnosed at Rochester

I’m extremely disappointed in the lack of caring and concern, that I’ve NOT received, by professional, well paid medical providers, who have chosen not to help elderly people like me, instead pacifying with words, rather than treating us with the same care as they give to younger patients. Perhaps this is only happening in the area where I live, but I suspect it is prevalent. Losing autonomic function, and I have that problem, like incontinence, faulty temperature control, labile blood pressure control, heart rhythm problems (a-fib, in my case), etc. is difficult for patients, and providers should address that problem, rather than ignore it! I know that if I lived near Mayo Clinic, all of my autonomic system problems would be addressed by the amazing medical professional staff, so my views only apply to my specific situation, in my particular location!

@seniormed

I have a neurological condition, PD, a bit different from yours; however, I have found some quality help for the problem of bladder control. I have had pelvic floor therapy, which was very helpful. After that, my urologist prescribed a procedure called PTNS (nerve stimulation procedure), which made a significant difference after 10 sessions. Here is a link from Mayo Clinic's website where both of the pelvic floor therapy and PTNS are explained. https://www.mayoclinic.org/diseases-conditions/overactive-bladder/diagnosis-treatment/drc-20355721

Since the PTNS was so helpful, I also decided to include a monthly acupuncture visit. It is costly and not covered by insurance, but I also found it very helpful, especially when combined with PTNS.

There are lots of things to try, you have to find what works best for you. Will you post again and let me know how you are doing?

I’m seeing my urologist soon to discuss further testing
suggested by my neurologist. Hope he concurs.
He is retiring soon. On trospium twice a day.
I will ask him to try the extended release dose for daily.
Working to link my doctors together as a team on the same page. There is the possibility that PAF may evolve
into Parkinson’s which is in my family history.

@seniormed
I hope you find the relief you are looking for! Keep posting with any questions and/or updates.

I understand "foundry rat's" frustration with some medical providers, but also understand that autonomic failure is a complicated and far-reaching medical problem that is just uncommon enough to leave many overbooked providers befuddled. What symptoms are the result of "normal" aging and which are related to autonomic failure. I was diagnosed with Primary Autonomic Nervous System Failure after becoming increasingly concerned about symptoms I was having over many years. I never considered a neurodegenerative disease until I read that the "nightmares" I was having were really REM sleep behavior disorder and up to 80-90% of people who act out their dreams went on to develop Parkinson's disease or another of the alpha-synuclein neurodegenerative disorder. That prompted me to investigate through literature searches and online lectures from distinguished medical professionals and resulted in my asking for a referral to a Movement Disorder Neurologist. One has to become their own health care advocate today and seek out the specialized help they need. I'm sorry you are having such a hard time - you are not alone. Hang in there and seek out a professional who can help you. Organize your thoughts and write out your symptoms (all of them) for review. Good luck.

@hopeful33250 I appreciate your encouraging, supportive words! Thanks for the practical advice!

@bmfoster Excellent advice! I recently sorted out, and wrote down my many symptoms. My neurologist retired, and I have a new neurologist with movement disorders training! For the first time, in years, this medical provider actually LISTENED to me, and acted on my list of problems. This neurologist got out the pin, and checked out my symptoms of pins and needles sensations, and numbness, in both hands and feet! The diagnosis this caring Doc came up with, was polyneuropathy! Then, my autonomic system symptoms, are related to my Parkinson’s Disease, but, additionally, the Neurologist ordered MRI and MRA scans, which revealed the reasons why I have had worsening balance issues, walking, ataxia problems, incontinence, falls, blurred and double vision, blood pressure labile problems and vascular migraine headaches, etc. This Doctor cared enough to check it all out, and, unfortunately, or fortunately, depending upon how one looks at the causative effect picture, the MRI findings revealed that I have had SEVERAL LACUNAR STROKES, and white matter small vessel disease, in my brain. The day after I got that news, from my new Neurologist, I had an emergency appointment set up, with my Cardiologist ( because I have had numerous atrial fibrillation episodes, in the last year or so ). The Cardiologist immediately put me on a blood thinner, and I am scheduled to have a Watchman implant operation for my heart, in March! So, now I have to take back, some of my denigrated remarks about some providers, because, it could be, that this new, young Neurologist, who is showing concern for helping me with solving my symptom problems, may have just saved my life! This is updated info, that has just occurred in my life, the last couple of weeks. Again, thanks for your wise reply, to my previous post!