LOTS of things can cause autonomic neuropathy: genetic diseases, infections, vitamin deficiencies, toxic exposures, autoimmune diseases and more.
In my case, an autoimmune disease called Sjogren's Syndrome has caused my autonomic neuropathy, which has caused POTS. I had many, many tests looking for the cause of my neuropathy before my doctors figured out that I had Sjogren's.
In my case, an autoimmune disease called Sjogren's Syndrome has caused my autonomic neuropathy, which has caused POTS. I had many, many tests looking for the cause of my neuropathy before my doctors figured out that I had Sjogren's.
If you suspect you have autonomic neuropathy, you should seek the advice of a neurologist, preferably one with experience in autonomic disorders. It may take a long time and you may have to go through lots of testing, but in my opinion it is worth it if you can find the underlying cause, especially because many of the things that cause neuropathy are treatable. If you can treat the underlying cause of your neuropathy, you may be able to get rid of your POTS symptoms entirely. Wouldn't that be great?
When you are reading about autonomic neuropathy and the causes of it, keep an eye out for information on peripheral neuropathy and small fiber neuropathy too. These are broader classes of neuropathy, but both include autonomic neuropathy. As a rule of thumb, most things that can cause peripheral or small fiber neuropathy can cause autonomic neuropathy too.
Here are some good resources that discuss the causes of peripheral, small fiber and/or autonomic neuropathy:
-Therapath, a neurology lab, explains some of the causes of small fiber neuropathy and the tests that can be performed to confirm or rule out these causes;
-Cleveland Clinic journal article;
-American Family Physician journal, which contains a VERY long list of things that cause small fiber neuropathy;
-Quest Diagnostics has a list of tests that they offer to evaluate patients for small fiber neuropathy.
Do you find neurologists who are experienced with autonomic neuropathy are somewhat common, at least in major metropolitan centers? Or is travel required unless you live near one of the seemingly few centers that does autonomic testing?
ReplyDeleteDid the neurologist diagnosis you with Sjogren's or a rheumatologist?
Thank you.
Dear Anonymous,
ReplyDeleteUnfortunately, autonomic neurologists are a rare breed. I live near NYC and while we have some wonderful neurologists here, I had to travel to Cleveland Clinic in Ohio before I was finally diagnosed with Sjogren's as the cause of my autonomic neuropathy.
The doctor who diagnosed me at Cleveland Clinic, Kamal Chemali, has since opened a new autonomic lab in Virginia Beach, Virginia. There is more info that may help you find a good autonomic neurologist on my "How to Find a POTS Doctor" post - just above the Blog Archive on the right side of this page.
Good luck!