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Dysautonomia is ruining my life, no help from doctors
Autoimmune Diseases | Last Active: Nov 16 12:20pm | Replies (51)Comment receiving replies
If you have an underlying autoimmune disease or signs of chronic inflammation that may be causal. Have you been tested for Parkinson’s?
Autonomic dysfunction can precede the onset of motor symptoms by
years ahead.
A few major cities have an autonomic laboratory with a specialist interested in autonomic disease. There are important tests for possible pathology.
Ask your neurologist about a SynOne test and anti cholinesterase antibodies.
There is expert team at Mayo Clinic. Neurologists are swamped with POTS patients and many months of backlog waiting for an appointment.
I am not expecting a cure just answers about the cause if there is a diagnosis.
Hoping to find an experienced doctor with the best treatment.
I don’t want another doctor inferring my age is most of the problem.
Age is not a disease.
Replies to "If you have an underlying autoimmune disease or signs of chronic inflammation that may be causal...."
@seniormed Thanks for your input. I got a diagnosis of autonomic dysfunction at Stanford, but no follow-up for explanation for 13 months. I gave up on waiting for Stanford. I tried University of Utah, which had about the same wait. This is not medicine imo. I conclude that my condition is not urgent. Once again I am alone making medical decisions, while doctors refer to other doctors who have no time.
The system is broken in many ways.
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@seniormed I don’t have an answer for you, I just wanted to tell you to keep pushing and asking questions! Hopefully, you can find a doctor to help you. I do have Long Covid and had 7 Stellate Ganglion Block injections that did help quite a bit with my PTSD/Anxiety. I was jumping out of my skin and just walking was difficult due to having body tremors, which have almost vanished. If I overdo it my body tells me by having tremors, so I try to never stay up or out late as I will have trouble sleeping. It’s sad I have to live like this as I’m only 69 years old and feel like I’m 90 some days!