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Autonomic nervous system disorder: No diagnosis or help yet
Two years ago I started having what appears to be possible autonomic nervous system malfunction. It started out with pins and needles and numbness in all of my extremities, visual disturbances, bowel disturbances, even paralysis of parts of my body would just go dead numb. What is worse is that these episodes come on out of nowhere and they have progressed to where I suffer almost every day now. The worst part of these episodes are that my spatial awareness, the way I feel sensory wise is totally off. So far no doctor has been able to figure out what's wrong with me from a neurologist to endocrinologist to cardiologist. I even have tachycardia many times during these events and from head to toe I feel absolutely sick head to toe. I am at my wit's end I need to find some doctor that knows what's going on and if this is disorder know me or an autonomic nervous system malfunction I need help. I just cannot believe in the United States of America that so many different doctors I've seen over 2 years with dozens upon dozens of tests and blood workup and no one can figure this out.
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Hi @rossk3. You may want to post this in the Neuropathy group. I believe this video from Mayo Clinic Labs talks about the QSART (sweat) test and how it relates to small fiber neuropathy: https://youtu.be/HXJ--wPIhNc. Just remember you are not alone.
-Aaron
I’m sorry you have been dealing with so much. Many of your symptoms seem to be consistent with what is seen in Sjogren’s Syndrome. According to John Hopkin’s Sjogren’s Center, “Sjögren's syndrome can cause nerve damage which regulates the coordination of heartbeat, respiration, and gastric motility. This is called an “autonomic neuropathy.” Examples of symptoms include lightheadedness when standing, decreased or increased sweating, and feeling full despite eating small meals.” Other main symptoms of Sjogren’s include dry mouth and dry eyes (which would cause sensitivity to light.). You might want to explore this more if a doctor has never mentioned it.
I agree with the possible sjogrens. I have that and it causes a lot of the issues you mentioned. My sweat test is way off and my tilt table varies to where I have passed and other times not done so great. I had a nerve biopsy done and I def have small fiber neuropathy. My doctor said sjogrens is the number 2 (diabetes takes first) cause of autonomic neuropathy.
Hello @rossk3 and welcome to Mayo Clinic Connect. Toughing out symptoms for 15 years has to be exhausting and can appreciate that seeking help can be costly.
I see that members @aaroncush @tinder68 and @katgusman have joined to share their experiences in a way that could be helpful to you as you continue to seek answers.
Have you been exclusively seeing neurologist at the same hospital or many by now? Are you open to seeking care elsewhere?
I have seen a few at the Cleveland Clinic but they pretty much said my symptoms don't line up with any 1 disease but seem to be a collection of random symptoms that kind of sound like alot of different conditions. As I have seen a number of people post on here I have had a few doctors suggest it is a result of anxiety,depression, trauma,etc... but I have entertained that and taken many steps with little result. I am open to anything at this point.
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1 ReactionThis sounds so frustrating. I have been to many doctors looking for a single diagnosis myself, and I have gotten multiple opinions. My symptoms got very bad in January and my PCP suggested I had a flare up from a possible viral infection. I have had symptoms like yours for many years, but not as severe as the past two months. Has anyone suggested this to you?
Best of luck to you,
Kat
It's funny you say that because everytime I have gotten sick for the last couple years my symptoms tend to get alot worse for a couple weeks. I also started to get a few large open staph infections and body acne on my left side this past year. Most of my symptoms are on my left side.
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1 ReactionMy symptoms are left sided too. It seems a lot of neurologists miss the significance of asymmetrical neuropathy.
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2 ReactionsI hope you can get some clarity soon. Did you get tested for Shingles? I had a rash on one side of my neck and shoulder with Shingles years ago. I still get numbness and tingling in the same spot.
Good luck,
Kat
Hi @rossk3. Your journey and symptoms sound so much like those of us in post covid group. I also have daughter whose been spending the last 5 yrs going to all the major healthcare systems for autonomic suspected disorder. She also just missed qualifying for Pots etc on formal tilt table by 3 points for test she waited months for and was having “better day” when done. Suggestion, her recent new cardiologist reviewed vitals and actual content of tests to see very small points of missed qualifying for official diagnosis of autonomic issues. He knows impossible to be seen same day, so offered she call day of bad symptoms and med assistant can do vitals to notate med records. Maybe your area can provide urgent care or facility to offer same arrangements thru your doctors to do “poor mans tilt table” and other easy in office diagnostics to get more helpful forward motion🙂