Hi Starburst,

As soon as I began reading your story, I thought a ha! dysautonomia (autonomic neuropathy). Mine came on with a barrage of symptoms last April. I also have sensory neuropathy which began a bit later. Here is my letter with perhaps TMI but I think adequate caution. I was hit with dysautonomia last April.

Some of my symptoms have spontaneously improved, such as the gasttoparesis, which only lasted a few months (although I do have severe GERD for the first time in my life). I'm very heat intolerant, have very dry eyes, mouth and hair (lost a lot of it...sad), and also have severe insomnia.

By far, my worst symptom is fatigue, which may be due to severe orthostatic intolerance (OI). The first two neurologists I went to did not even test me for this (I was formally diagnosed with small fiber biopsies). I didn't understand why I became basically bedridden with profound fatigue.

The national dysautonomia specialist I paid a fortune for basically mumbled it was just a part of the problem. No treatment proposed except as much exercise as I can stand. I began baby yoga with a trainer (I had always been very athletic....until I wound up breathless, sweating, and sleepless in bed for months.) I was already on a work leave.....for I had a neurological reaction to medication...more like Parkinsons, in the early fall, 2014. Long story. I was much recovered when the dysautonomia hit. Went from sick leave to disability with the new diagnosis.

I finally hauled myself off to a cardiologist whose name I found just last month. He did a tilt table test...and my (high) blood pressure fell from 140/90 to 80/60 in a few minutes...they had to stop the test. I also have an accelerated heart rate with the tilt (POTS). Lots more gory details.... This is why I have such trouble sitting and standing.

I'm a mess....but here is the reason for my post. I do not yet have any sort of treatment plan and I have yet to find a doc to give me one.

The cardiologist put me on a beta blocker, Propanalol, which is helpful. I can't take standard meds for OI because they are designed for people with low blood pressure. I am gradually increasing exercise, but I'm still basically bedbound.

I went back to the dysautonomia expert last week, and he was again useless (though good for my disability paper trail). I now have a really expensive appointment at a dysautonomia center at NYU here in NYC. I've tried to talk with someone there with medical expertise yesterday to see if it is worth my while, but I'm told I have to email my questions. I will do this Monday. I have identified two new neurologists and hope to speak with them to choose one....one is also at NYU.

I'm just looking for an empathetic clinician who will spend some time with me. I like the cardiologist, but he is frantic and overbooked. Nice, nice guy with little time....and yet not up on the latest terminology and treatment. I did have a thorough cardiovascular workup with him...I'm basically OK except for the OI and POTS. Of course, he can't address my sensory neuropathy. ...which is worsening.

I also saw a rheumatologist to rule out an underlying autoimmune condition. I saw an ophthalmologist for dry eye and learned I have some visible small fiber nerve damage. I'm going to investigate whether I have Mast Cell Activation Syndrome (I started a long thread here about this recently), for all my troubles began with an anaphylactic reaction to meds.

What a depressing response to you Starburst, but I felt I had to tell my story because dysautonomia is notoriously difficult to identify and treat. I just feel determined to find a great neurologist....I think this is key. Fame is not a criterion, I learned. My doing research is so important....why I'm phoning all potential docs. I basically figured out I had dysautonomia last spring and my first neurologist just denied it until the biopsies came back. **

So all I can say is do your best to do the necessary research (including possibly useless appointments) to find someone good. ** I found my expert this way, and he was a washout. So try to talk to someone in the office. Obviously, this is a time-consuming and possibly expensive quest. I have read about people getting their lives back with the right doc though! Keeps me going.
**it is also worthwhile to use the key word "dysautonomia," as you search, for I think most folks here do not have autonomic neuropathy. I'm now looking at neurolgists' qualifications throughout every medical center in NYC....and phoning!

Best of luck, and don't hesitate to PM me if you have more questions or insight!

Sylvie