Seeking a new neurologist for sfn

I am also trying to find a neurologist that works with PN. I live in the San Francisco area.

SFN, has been a major problem for me. The doctors in my location, Charleston South Carolina do not specialize in SFN. I’m allergic to medication‘s for pain. But I too, have been looking into Duke, Cornell, Presbyterian. Someone who could work with the doclocated here in Charleston.
They are doing it all the time now, just have to check insurances. I find the only thing that relieves it is hot for about 20 minutes and then I wrap my feet, ankles and calves with ice braces that I got from Amazon, I keep them on for almost an hour, so I can sleep well. It’s been really bad driving lately because I just moved, SNF can make you also feel a bit of an anxiety because it ramps up in your feet and ankles when someone cut you off, or you’ve been out actually walking for groceries. Anyway, it’s just been a big problem. I studied it, and it seems That it affects the gut, the brain it is outside of the spinal cord, it creates dizziness, or vertigo, your heart, cardiovascular, sweat glands for some people. I only have one parathyroid, and my endocrinologist said the one I depend on because of age, and when doing the surgery they had to take a bit of biopsy just to make sure it wasn’t affected . So they left it but he said it’s been minimized so now I’m doing more of a bit of hypo. I will be talking to him on March 22 after I do 30 pages of labs for small fiber neuropathy. He talked to me about finding a neurologist who treats this and would work with me after I get the labs. Not many doctors do that , and he repeated I am not a neurologist. I am your endocrinologist, but I can see you have stopped asking questions for the last three years. And you never did this. I’ve been with him for almost 8 years.

I live in Syracuse New York and am looking for a neurologist who can figure out if I have polyneuropathy. Any recommendations?

@dinawashere - I live along the beach in south Jersey and could not get answers so I made several trips to Phila and went to Jefferson and University of PA and finally made an appt at Johns Hopkins. The best testing, by far was at Mayo but I'd try Johns Hopkins, they have a high-quality neurology department and likely within a few hours' drive. Good luck.

Thank you for responding!

Johns Hopkins. It's a 2 hour drive for me but worth it. I live in eastern PA so I take the trip. My actual neurologist I see regularly is in Woodbury NJ. I saw a neurologist at JH too and they did a 4 hour evaluation. They referred me to Dr. Christo as I was diagnosed with CRPS (chronic regional pain syndrome). No answer as to what caused it but was referred to a very good pain specialist Dr. Christo. I hear he is on Sirius Radio show.

Thank you so much for your reply! I will look into these!

It really does not matter what kind of neuropathy you have or what caused it. The bottom line is easy to read: THERE IS NO CURE FOR NEUROPATHY ! Medical science has not yet learned how to regrow or repair nerves in our bodies. And unfortunately there are not many scientists working on this problem. So we are STUCK with it.

@chapanddrew8 You have peaked my curiosity with 30 pages of labs for small fiber neuropathy. I had 20 tubes of blood taken in one day. I have SFN idiopathic. I would love to know what those 30 pages of test include. I know I was checked for basic autoimmune diseases. After reading I saw you could have an autoimmune disease and not even know it. I also had a genetic swab which was negative. I knew that because no one in my family had anything like that. I woke up with pinpricks from head to toe and in my eyes. That would be non-length dependent. I had two Covid shots in January of 2021 and within 6 weeks of those I started with the pinpricks. I have also read it affects the autonomic nervous system. It is crazy. @rnlorena

MR NEUROGRAPHY. I came across an article regarding MR Neurography. I was quite surprised. It is like an MRI but it shows the nerves in your body. I saw a PA neurologist yesterday and brought it up. She said it was the first she heard about it. She is gonna read about it. From what I understand an MRI can see nerves but this one can see more. If you had severe damage to a nerve I am sure that would be helpful. It says it can be used for persistent nerve related symptoms despite normal or equivocal routine spine imaging and specific abnormalities on electromyelography.
I also googled MR Neurography and small nerve fiber. Interesting reading. I hope it’s okay that I posted this. @rnlorena