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Just Diagnosed with Small Fiber Neuropathy
Neuropathy | Last Active: Jul 4, 2023 | Replies (235)Comment receiving replies
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
Replies to "Hi @boo55, welcome to Mayo Clinic Connect. You hit the nail on the head. Small fiber..."
@johnbishop 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?
Do you have any recommendations for my area or surrounding?
Hi John. thank you for all of your input. This is very scary for most of us. I thought my neuropathy was from my back and pinched nerves, but now they say surgery won't help. My feet burn so bad I can't walk very much in the day and it's awful at night. I have atropathy in my left leg also.I'm trying to work on the leg a lot, but it seems to aggravate the neuropathy when I do.
I just wanted to ask you if you did the full protocol on the solutions program. I mean everything it said to do. it seems complicated to me and I can't seem to find the answers I need. You seem to help people the most.
I am new here and diagnosed with small fiber polyneuropathy. I DON'T have pain; my problem is that acetylcholine is not getting to my muscles which causes weakness in my arms and legs. I can't seem to find anything about this.
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Thank you for the information. I appreciate your reply.