Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

how do you know if you are sensitive to gluten? is there such a food test that can confirms that?

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@lavieauxusa1972

how do you know if you are sensitive to gluten? is there such a food test that can confirms that?

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High IGA numbers on blood test but no Celiac. Mostly my gut. IBS for many years. Just my own personal hypothesis, @lavieauxusa1972

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@lavieauxusa1972

how do you know if you are sensitive to gluten? is there such a food test that can confirms that?

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There is a blood test that specifically tests for gluten sensitivity. Just ask your neuro doc or internist to order it.

Liked by teetee7

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@lorirenee1

There is a blood test that specifically tests for gluten sensitivity. Just ask your neuro doc or internist to order it.

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Thanks

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@peggyn

I'm not sure what kind of neuropathy I have, but my neurologist is sending me to a nerve- muscle specialist. I have to say I am so scared. My legs burn so bad I can hardly function..I'm thinking it doesn't matter what kind you have as nothing helps.

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Pegg, My heart goes out to you. I understand the burning only too well. Sometimes I just feel like taking my shoes off, and putting my bare feet in the snow. Neuropathy is just treacherous. I do have one thing that helps my feet with burning, stinging, stabbing aching…I use a CBD salve I rub on my feet, and it helps the pain and burning. It is from the Ananda Hemp company. They sell CBD products, but are legal, because the do not use the part of the plant used to make marijuana. Anyway, this salve helps with immediate, very bad burning and pain. It is Ananda Spectrum Salve 125, topical cream. They have only one type of cream on their website, you cannot miss it. I have tried many types of creams, laser, the typical neuropathy pain drugs, but this salve just saves me. For me, it lasts about an hour or so. Then I reapply if needed. The cream costs about 25 bucks, and is worth every penny. Shipping in a few day. Best regards, Lori Renn

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Hello @boo55, I was just diagnosed as well! Thinking about you and sending healing thoughts.

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Thanks. @robge.
What were your first symptoms ? SFN is a Werid, huh ? You can describe it to friends and family but it is hard to understand. Sending kind thoughts. boo55

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@affliction313

I was diagnosed with periphal neuropathy about a year ago. I am not diabetic or even close, I do not drink often maybe a drink once a month, I have had the elctro stuff done everything looked fine….numerous times blood work has been done. and they can not figure out a cause. I am only 42 and very active this has really changed my lifestyle. They have basically said we don't know why this is just going to be a nuisance for the rest of your life. I was on 1800 mg of gabapentin and that did nothing now I am on 400 mg of lyrica a day which doesn't seem to help either. All they keep saying is oh your a bigger guy it may take more medicine for it to work on you. I am trying to find a better answer than that is there any sort of doctors, clinics, ect. that specialize in this sort of thing?

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I am so sorry you have to deal with this. My name is Jason and i have been diagnosed with Idiopathic Small Fiber Nephropathy and am 45 years old. i do not have diabetes, i do not drink alcohol and am looking for others to just talk to.

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@jasont Greetings! I am a “me too”. Same diagnosis. Been confronting all of the ways in which SFN impacts quality of life and am searching for activities, treatments and advise from fellow traveler’s along this road. What has been recommended to you that helps contain the symptoms? What would you like to ask about? This is a very good channel or pipeline for communicating and learning. Stay positive and know that I am wishing you a pain free day or even a few good hours of peaceful sleep. Chris

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@albiet

I have a positive skin biopsy for small fiber neuropathy. over the years i have had massive burning and other sensations but never realized that it came be attributed to this. one of my drug panels came back my ganglioside gd1a at 123 with a normal of 0-50. i am being told its a non specific indicator of immune system disfunction. my actual question is has anyone actuak knowledge of steriods or ivig working for this. i saw some results rfom mass general indicating that it might but talked to 2 drs in nyc and both said no.

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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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I have a positive skin biopsy for small fiber neuropathy. over the years i have had massive burning and other sensations but never realized that it came be attributed to this. one of my drug panels came back my ganglioside gd1a at 123 with a normal of 0-50. i am being told its a non specific indicator of immune system disfunction. my actual question is has anyone actuak knowledge of steriods or ivig working for this. i saw some results rfom mass general indicating that it might but talked to 2 drs in nyc and both said no.

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@johnbishop

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

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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@lauraj155

@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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@albiet

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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@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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