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Autonomic nervous system disorder: No diagnosis or help yet
Stroke & Cerebrovascular Diseases | Last Active: Mar 25 7:47pm | Replies (42)Comment receiving replies
I have been dealing with what I recently learned are autonomic nerve issues for 15 years now. I just got back from another ER visit where they checked my vitals and sent me on my way. I have been trying to tough it out so I can provide fir my family and not be a burden but I am getting to the point where being tough isn't enough. My symptoms are random tender spots all over my body,constipation, dizziness, numbness mostly on my left side,difficulty swallowing and breathing ,tingling in my face feet and hands off and on,dry mouth,sensitivity to light,and others I have probably forgot to mention. I have been ro several neurologists who have found mostly nothing. I did have a sweat test which was significantly off but because I passed the tilt test they dismissed that. I stopped going because even after insurance the debt was just becoming too much. After this latest flare up I may have to give it another shot as I am now way over my head in bills anyway now. Anyone have any ideas or suggestions? If I didn't have a young daughter who I want to be there for and love more than anything I would have given up long ago.
Replies to "I have been dealing with what I recently learned are autonomic nerve issues for 15 years..."
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?
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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