Small fiber neuropathy and then some

Posted by marylynn13 @marylynn13, Jan 19, 2022

I have an idiopathic neuropathy that seems to be of little interest to any physician. Maybe I am asking to much but I have a progressive constellation of symptoms that are all due to neuropathy but I can't find a physician willing to put things together. It started off with paresthesias in extremeties. Then numbness and tingling on one side of my face. I also had temperature share ghost ion on that side of my face..specifically every time I rolled onto my left side my cheek would burn and wake me up. Then I developed severe vertigo and trigeminal neuralgia on the same side. I went to mayo in Rochester but they dismissed me. Later I developed a Neurogenic cough. I now have the cough, gastroparesis, progressive numbness and tingling everywhere, sexual dysfunction, trigeminal neuralgia, and on top of that large fiber nerves are starting to be impacted carpal nerve symptoms, sciatic nerve etc despite nml emg! I am only 62 and am really really tired! I have had extensive labwork and nothing seems to be wrong. It's not diabetes autoimmune heavy metals,b12 deficiency thyroid.
If anybody can relate to this I would love input. Also if anybody knows a neurologist in South Carolina that be helpful. I cannot sit to long so traveling out of the area is tough. Also my experience has not been good.

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Hello @marylynn13, welcome. I can relate, and understand your frustration and confusion. Do you mind sharing a little more information about yourself? How were you diagnosed for SFN? Are you presently with a neurologist? Have you begun taking nerve medication such as Gabapentin or Lyrica?


@marylynn13 I can relate down to every T of what you so heartfeltly wrote down. I actually live in South Carolina and see Dr. Robert Carlile at Charleston Neurology Associates (considered Summerville, where I live). He has taken the time over the years for me, going very in depth and not stopping until he's exhausted all his efforts, and even then he doesn't quit. He is very compassionate and empathetic and very concerned about one's well-being and keeping things minimal in regards to cost. He's a true godsend to me. I would recommend him and none other here in SC. Please reach out if you have any other questions, I am willing to help! May you find relief and rest soon!

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