Who else has Autonomic Neuropathy?

Just an FYI, I do not have diabetes, nor am I borderline. I'm happy to answer any questions.

I have autonomic neuropathy along with small fiber sensory neuropathy. I call it the gift that keeps on giving. I’m loosing the nerves in my heart, kidneys and bladder do not work correctly, always in pain throughout my body, pupils do not constrict or dilate when they should, tinnitus, atrial fibrillation, orthostatic hypotension, non stop Charlie Horses at night along with muscle spasms. I am now on hospice because of my heart nerves. 7 years I had a pacemaker put in. This helped for a while along with medication. Nothing works for my heart. I black out a lot when doing activity.
What has helped me some, gabapentin, clonazepam at night, Bupropn, medical marijuana gummy’s and Kratom for pain, oxygen to compensate for poor heart issues.
I do have good days but it’s always followed by weeks or months of severe difficulty.
My heart goes out to you because it is a very difficult disease to deal with. My whole life unfortunately revolves around my disease.

AN can also present digestive problems, I’m learning the hard way. There may be a condition known as nutritional neuropathy. I may have it. Been having problems. Will be seeing specialists soon. Anyone else?

My loved one also has small fiber neuropathy. Do you have diabetes? If so, T1 or T2? Controlled or not?

How long ago were you diagnosed with AN? Here are his symptoms: orthostatic hypotension, erratic BP ( sometimes very low but hasn’t fainted yet), often very dizzy (usually when trying to stand up), extreme fatigue (can sleep all night and a good part of day), becomes out of breath doing minor tasks such as folding clothes), headaches, sometimes double vision, something he describes as brain fog, a sense of trembling at times, episodes of hot flashes (usually about 5-7 min … at first attributed to treatment for prostate cancer but now not sure … describes self as “soaking wet” but I see no sweat).

PROBABLY in response to ADT treatment for prostate cancer, subsequently diagnosed with iron def anemia. No sooner was that corrected, he was then diagnosed with B12 anemia (currently corrected with injections).

Then, there’s the problem with MGUS and high Kappa Light Chain in serum test. High kappa/Lambda ratio.

Otherwise, has kept himself in good physical shape. Looks far younger than 79. Like you, occasionally has couple good days in a row.

POTS?

I live in Europe and I'm suffering SFN with neuropathic pain in both feet and hands and some autonomic stuff as night sweating, swollen blood vessel and some digestive issues, along with dried eyes and mouth.. Etc I've seeing a lot of specialists , many of whom suspect I have SFN but I have not still a diagnosis. Today at last I'm having a corneal confocal microscopy procedure. Does anyone know if this microscophe is enough to confirm this pathology?? How can I know it has an autoimmune origin?? What else can I do??I have also other autoimmune diseases such as hipotiroidism and gastritis... But they have discarded others..Im only taking lyrica and tryptizol and a lot of vitamines, but this thing is progressing. It started in my right leg 2 years ago, are there any more things to try on?? I'm getting bored.

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@gregoria, It sounds like it can confirm small fiber nerve loss. Here's an article I found on the procedure.

"Corneal confocal microscopy (CCM) is a rapid non-invasive ophthalmic imaging technique that can image small nerve fibers in the cornea and has been utilized to show small nerve fiber loss in patients with diabetic and other neuropathies. Aug 19, 2021" --- Corneal Confocal Microscopy to Image Small Nerve Fiber Degeneration: Ophthalmology Meets Neurology: https://www.frontiersin.org/articles/10.3389/fpain.2021.725363/full

Can you give an update on what you find out after the procedure?

Thank you.!!!

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I do, it hurts but I am trying to keep the sugar down and exercise more. Is there anything else that helps?\

Begin following a whole food plant based, low-fat diet. Have your vitamin B and D levels checked they’re usually low for people with autoimmune disease. B vitamins are needed to rebuild the nerve sheath. A synthetic B vitamin, NAC is scientifically proven to be better at rebuilding nerve sheath. Along with whatever type drugs the doctor gives you, try to heal your gut and microbiome by feeding it lots of green leafy vegetables.