Just Diagnosed with Small Fiber Neuropathy

Hello @albiet, welcome to Connect. There is another discussion where your post may receive more visibility and you can meet other members and learn what they are doing for treatments. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Neuropathy > Just Diagnosed with Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/just-diagnosed-2/

@elained, @arcticmark, and @sdswoboda53 have discussed IVIG treatment in other posts and may be able to share their experience with you. Has your doctor suggested any other treatments for you?

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john, thank you. the dr first diagnosed this 10 years ago. recommend nothing and thats from someone at cornell. when i went back this year, i tried to explain the pain and they offered me PT. i just saw a different PN doctor in nyc. he is recommending lyric or neurotin, neither of which i'm happy about but with the pain dont have much choice. i told him about the study at mass gen showing ivig or steriods and he said we can discuss but doesnt seem likely especially due to ivig cost. what interesting is my major pain is not in my hands or feet. i iget alot of internal buzzing all over . i get burning on and off throughout body. have started to get some minor tremors but being told its nothing or med related. sorry to run on but anyone have any ideas?@elained, @arcticmark, and @sdswoboda53 i hope posting your symbols gets me to you guys.

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@albiet, I have neuropathy and pain is mainly in my feet. I have had it since 2005. I wanted you to know that I did go on a very dose of hydrocortisone which was equivalent to 3 mgs. Prednisone. This helped me more than any other medication I was taking. I took it for a few years and weaned off of it. Things remained calmed down for a very long time until now. However, I really don’t want to go down the steroid road again because of the side effects. I wish you the best. -Laura

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thank you laura. how does steroids work.? what have been the side effects for you?
are they taken for a long time or just a short course/when i looked at the mass general/harvard research it looked like out patients got 1mg/kg/day x 4 weeks then a brief taper.

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john, thank you. the dr first diagnosed this 10 years ago. recommend nothing and thats from someone at cornell. when i went back this year, i tried to explain the pain and they offered me PT. i just saw a different PN doctor in nyc. he is recommending lyric or neurotin, neither of which i'm happy about but with the pain dont have much choice. i told him about the study at mass gen showing ivig or steriods and he said we can discuss but doesnt seem likely especially due to ivig cost. what interesting is my major pain is not in my hands or feet. i iget alot of internal buzzing all over . i get burning on and off throughout body. have started to get some minor tremors but being told its nothing or med related. sorry to run on but anyone have any ideas?@elained, @arcticmark, and @sdswoboda53 i hope posting your symbols gets me to you guys.

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Hi @boo55, welcome to Mayo Clinic Connect. You hit the nail on the head. Small fiber neuropathy is one big ick. I know it's not much consolation but you are not alone. I have idiopathic small fiber peripheral neuropathy. The neurologist thought it might be hereditary but no relatives close and it doesn't make much difference to know for the patient (in my non medical trained opinion). I'm not sure of other tests to determine the cause of the small fiber neuropathy but here is some information that may be helpful.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

You mentioned you are prediabetic. Did your Dad have diabetes? The reason I ask was my sister had diabetes and was told they may have to amputate her foot at one time. She passed away several years ago but always struggled with foot problems due to her diabetes.

@jana59 and @boo55 - I take a protocol of over the counter supplements - vitamins and minerals that help me and has helped others but may or may not help you. I found it in a closed Facebook group. The group has a website with a link to join their Facebook group - http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

John

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@albiet, the hydrocortisone was prescribed by my PCP. I am fairly sensitive to meds so I started at 2.5 mg. twice a day due to getting insomnia from them. I gradually increased the dosage to 10 mg. and took it in the morning. I used a compounding pharmacy. It really helped turn things around for me where nothing else I tried made that much difference in managing the pain. But, I had to taper very, very slowly over a few months. I tried to taper once too quickly which didn’t work as the pain increased. The other side effects taking it long term which you probably know are high blood pressure, osteopenia. It was such a low dose that it did not cause any weight gain or puffiness. It also helped with increased energy as I was so tired from the pain drain! -Laura

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