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wjones159
@wjones159

Posts: 3
Joined: May 26, 2018

Small Fiber Neuropathy

Posted by @wjones159, Sat, May 26 5:52am

Good morning,

I have been diagnosed with SFN, and was a bit alarmed at my biopsy results. I have read over a lot of the symptoms and discussions others posted, and did not want to be overly redundant, so in the interest of keeping this post marginally analytical, I was hoping you could give me an idea of the severity of the results.

The lab states that low density is in the range of 6.2-6.8 for the thigh. My observed density was 0.07. For the calf the low range was 4.8-5.4 and my observed was 0.67.

Those numbers seem extremely poor and depressing. Is it as bad as the numbers would seem?

Thanks for any thought you can provide
-Scott

REPLY

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

Sounds you need a more definitive analysis. My test was .09 when the average wa greater than 8.4. That is supposed to represent your small nerve fibers as a percent of the total sample. As we age , we all have fewer and fewer small fiber nerves. My understanding is that with such low percentages, the small fibers cannot do their assigned job. As a consequence, all they can do is send pain signals. That is how my neurologist explained it to me.

@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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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.

An additional question:

The Neurologist biopsied my left leg only. I know this was done originally just to screen for SFN, but as I have symptoms consistent with SFN in all extremities, should I ask them to biopsy each one separately? IE is it clinically significant to do each, or does a positive test indicate the neuropathy everywhere?

@wjones159

An additional question:

The Neurologist biopsied my left leg only. I know this was done originally just to screen for SFN, but as I have symptoms consistent with SFN in all extremities, should I ask them to biopsy each one separately? IE is it clinically significant to do each, or does a positive test indicate the neuropathy everywhere?

Jump to this post

@wjones159 that's a good question and I wished I could answer. Unfortunately I have no medical training or background. I had an EMG nerve conduction test to test for nerve damage that was used to diagnose my small fiber peripheral neuropathy. There is a discussion here on Connect about the test:

Groups > Brain & Nervous System > Nerve conduction test
https://connect.mayoclinic.org/discussion/nerve-conduction-test/

I agree with Chris @artscaping about getting a more definitive diagnosis. Maybe you've already done this but I like the way you listed your health history and if you haven't discussed it with the neurologist I'm wondering if that would give them more data to use.

Keep asking questions…you are your best advocate!

John

@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

Jump to this post

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.

@sita

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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Have you checked your B12 and Vit D levels. I just did a spectra cell test nutritional. It suppose that tell you if you are absorb nutrients at the celllar levels. I’m having the biopsy done next Tuesday.
Hoping this will give me some answers. Getting checked again for glucose levels which are always normal etc.
I have high SIBO level that are81, bowel issues. Using miralax. I Eat very healthy.
Just this pain is terrible
Can’t even drive anymore
I’ve posted on other connect sites. Trying to figure out what is going on. I also have spinal stenosis. Tremors. Etc lve researched. It can be genetic. Issues. Toxins. Viruses
Meds etc. but only Med I had 3 times in a years time that I reacted to was ciprofloxin antibiotic. That’s another long story. I’ve alre posted
so hopefully the medical field will figure out this someday.
Friend of ours. Who was in Vietnam war. Has neurapathy very bad. But it’s from
The agent orange. VA Confirmed it. So he’s on total disability. I tried gabapentin 100 mg. and it made me have slurred speech.
So my prayers to all of you.

I have and am on B12 self injections every other day, at my insistence, my B12 was 472 when I started, range is approximately 200-900. The US doesn't supplement at 472 usually, but Europe does. The injections help with energy, some neuropathy, some of the other neurological symptoms. I am so sorry for your pain and difficulties. It is hell having an invisible, undiagnosed disease. I send you prayers as well. I hope you get diagnosed and cured very soon!

Think it's great that something is working for you. Good luck with the B12 in the future. I have tried B12 but it seems to make my condition worse.
I do have numbness from the waist on down to my feet and at time is very painful, especially the right leg-foot. Have not found anything to help and condition only seems to worsen weekly. If anyone has any suggestions please help. Not knowing whats happening or where this will end up causes the anxiety to go through the roof.
Mayo will not give me an appointment.
Does anyone know that if I just go there and wait will someone see me in neurology?
Thanks for any help you can provide.
Fred

@sita

I have and am on B12 self injections every other day, at my insistence, my B12 was 472 when I started, range is approximately 200-900. The US doesn't supplement at 472 usually, but Europe does. The injections help with energy, some neuropathy, some of the other neurological symptoms. I am so sorry for your pain and difficulties. It is hell having an invisible, undiagnosed disease. I send you prayers as well. I hope you get diagnosed and cured very soon!

Jump to this post

Thank you. I hope the punch biopsy finally shows something or the nutrients test.
I can’t even walk very far. And heat bothers me. My body seems to be trying to sweat when outside but it causes pain all over my body
Had the lip biopsy for Sjögren syndrome it was negative. The drs kept telling me it might be this auto immune disese.
Many ANA tests all good.
So guess we will see.
Im missing so much good times with my family and I use to be the organizer. But pain has stopped all that. So guess just take each day as it comes.
And pray.

@goetf4997

Think it's great that something is working for you. Good luck with the B12 in the future. I have tried B12 but it seems to make my condition worse.
I do have numbness from the waist on down to my feet and at time is very painful, especially the right leg-foot. Have not found anything to help and condition only seems to worsen weekly. If anyone has any suggestions please help. Not knowing whats happening or where this will end up causes the anxiety to go through the roof.
Mayo will not give me an appointment.
Does anyone know that if I just go there and wait will someone see me in neurology?
Thanks for any help you can provide.
Fred

Jump to this post

Hello Fred @goetf4997, you mentioned earlier that your pain and numbness is associated with spinal stenosis. I see that you mentioned you have tried Tylenol and Gabapentin but neither helped with the pain. Did your doctor have any other suggestions or treatment plans?

Also, have you tried getting your doctor to give you a referral for a Mayo Clinic appointment?

John

@12061948

Thank you. I hope the punch biopsy finally shows something or the nutrients test.
I can’t even walk very far. And heat bothers me. My body seems to be trying to sweat when outside but it causes pain all over my body
Had the lip biopsy for Sjögren syndrome it was negative. The drs kept telling me it might be this auto immune disese.
Many ANA tests all good.
So guess we will see.
Im missing so much good times with my family and I use to be the organizer. But pain has stopped all that. So guess just take each day as it comes.
And pray.

Jump to this post

Have your doctors talked about IVIG? I have widespread neuropathy symptoms, no sweating well below my waist, positive for short fiber, long fiber, motor and autonomic nerves but negative for lip biopsy and other common inflammatory and autoimmune tests. Started IVIG last month and it resolved about 40% of my symptoms with one infusion. IVIG doesn't work for everyone, but there are studies to see who additionally can benefit from IVIG treatments.

Wii insurance cover it?

@sita

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.

Jump to this post

Please tell me where you read about neuropathy and bowel and bladder issues being related to nutrition? I have all of the above symptoms plus some and have had three stomach surgeries. I am convinced malabsorption is an issue, but as has been said, doctors are not trained in nutrition.
Thanks! Sita

I would very much appreciate journal articles stating this!

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