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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.

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Replies to "I understand "foundry rat's" frustration with some medical providers, but also understand that autonomic failure is..."

@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!