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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Jul 4, 2023 | Replies (235)

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@albiet

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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Replies to "john, thank you. the dr first diagnosed this 10 years ago. recommend nothing and thats from..."

@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

Hi, @albiet - the @username construction you've used tags the members you mentioned so they know you are addressing them. Perfect. If you've not had the opportunity yet, do click on VIEW & REPLY when you get an email notification from Connect, so you can go onto the site and see the whole conversation.