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wjones159 (@wjones159)

Small Fiber Neuropathy

Neuropathy | Last Active: Sep 25, 2021 | Replies (82)

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@johnbishop

Good morning Scott (@wjones159),

Welcome to Connect. I'm glad you found us. Connect is a great place to ask questions and learn what others with similar health problems are doing for treatment. I also have small fiber peripheral neuropathy which I've had going on 20+ years. I was diagnosed with idiopathic SFPN in 2016 when I was concerned it was getting worse.

Sometimes test results can be depressing. You are not alone trying to figure out what it all means in the long run. I have no medical training or background but I I would not focus on the numbers. Keep asking questions and learn as much as you can about your health conditions. Better informed means you can ask your doctors better questions and help them do their job better.

Scott, can you tell us more about your SFN? What type of symptoms caused you to have the biopsy – pain, numbness?

Here are some links that may provide more information for you on SFN:

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:
https://youtu.be/S1qt-ueIP6

Oxford Academic – The diagnostic criteria for small fibre neuropathy: from symptoms to neuropathology
https://academic.oup.com/brain/article/131/7/1912/384848

NIH – Diagnosis and Treatment of Pain in Small Fiber Neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

Here is a link to my PN story:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=44#comment-65985

I'm also tagging a few members with PN to see if they can share any information with you about biopsy numbers/results. @artscaping, @oldkarl, @medic7054, @lynsorensen — do you have any thoughts for Scott on skin biopsy numbers for small fiber neuropathy?

John

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Replies to "Good morning Scott (@wjones159), Welcome to Connect. I'm glad you found us. Connect is a great..."

John,

Thanks for taking the time to provide me with the information above.

The symptoms have always manifested interestingly to be because I am an Active Duty Service Member, so I do a lot of things physically that I think keep me very aware of my body dynamics. Aside from Soldier tasks I also lift weights, run, bike, and swim. As far as symptoms go:

-2013: I started to get pins and needles in my feet and up my legs. I noticed it more in my left leg, which also extended higher up the thigh. Later in the year I started to notice I was having issue feeling muscles actually work. It’s not that I could not move weights and inervate any specific muscle, but instead not matter what I did I could not feel that typical “burn.” I specificallly noticed this in my biceps.

-2014-2015: The pinks and needles remained in my feet and legs, then I started to notice them in my hands. I was getting sharp pain in my left forearm, which would wake me up in the dead of night. It felt like a muscle spasm, but the muscle was relaxed to the touch. Neuro gave me Gabapentin and that helped with the severity of the pain. Around this time I also started to have issues more related to autonomic function. I went from never having bowel issues to not being able to use the bathroom for days. Docs did tests and procedures and called in IBS. The truth is I feel the pressure associated with a BM, but cannot go when I sit down. Similarly, I have lost much of the sensation of fullness and hunger. Not certain if that is or is not related.

-2016-2017: Everything just stayed the same in terms of numbness and tingling. I began to have sporadic pain in my hands and feet, which I would describe as a stinging sensation, like being stung by bees (just the initial pain) all over an area. I also developed pretty severe pre-syncipal episodes. My blood pressure has always been pretty low, fluctuating from 110/70 down to 90/50 depending on how much ive been running. During this period I started to get light headed everytime I stood up, and in one instance I passed out just standing and having a conversation with someone. Docs ran every cardiac test known from stress tests to echos, just told me to eat. Stay hydrated, and don’t stand up too fast.

-2018: I finally went back to Neuro after my hand went so numb on the range I could not initially get my finger to pull the trigger. Again not a motor issue, but I could not feel the trigger to pull it. That’s when I was biopsied.

Other history: So I have spinal stenosis in my thoracic spine, bildginng discs at T9-T10 and T10:T11 then bluffing discs at L3-L4 and L4-L5 without stenosis. I also have disc degeneration and osteopyhte blushes with narrowing of the foramenal opening through my cervical spine. Initially the doctors were hell bent on blaming my sensation issues on my spinal issues, but obviously that was not the lone issue. I am currently taking gabapentin, only 300 MG at bed, and 800 MG of ibuprofen one to three times a day as needed.

Curious if you have any thoughts.

Scott, I am so sorry to hear about the issues you are having. I have been researching similar symptoms and issues and have read that when neuropathy is accompanied by bowel/bladder issues that nutritional causes should be investigated. This is a difficult area because most doctors are not trained in those issues. I hope you can get a diagnosis and help very soon. Good luck, Sita.

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