Small Fiber Neuropathy

Posted by wjones159 @wjones159, May 26, 2018

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

I recently had a biopsy and my Neurologist said that I had short fiber neuropathy, but when I saw the results, my skin fiber nerve density was OK. However, my sweat gland density was low. I am not sure what this means. Does anyone know?

REPLY
@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

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You can have your physician refer you to Mayo. There is a section on the Mayo website for that. I was able to refer myself to Mayo after 5 local surgeons missed the problem and wouldn't help me. I contacted them on the website, they called me and had me send in all the imaging (spine problem). A surgeon at Mayo reviewed the imaging and offered an appointment. The website also has a section to show what insurance they accept. I have heard it can be difficult to be seen there, but I got in. It was after 3 years of missed diagnoses, and that likely was a factor, and I had an issue that surgery could repair. You do need to go through proper channels and have them issue a patient number. I don't think walking in cold and waiting will work. Once you are a patient, you can wait for available appointments on a standby basis. You might try a neurologist outside of Mayo and see if they can refer you.

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@johnbishop

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

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No other remedies for pain or treatment plans. Undergoing another MRI next week.
My PC chooses not to refer at this time. If the Neurosurgeon comes up without any solutions after MRI review I will ask him to refer.
Thanks for your help

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@sita

I would very much appreciate journal articles stating this!

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Hi @sita, I'm not sure what article was mentioned but there are a lot of them out there. What started me on my journey to eating healthier was a book I found – The Wahls Protocol by Dr. Terry Wahls. She has MS and was able to get rid of most of her symptoms through cellular nutrition. You can read more about her here – https://terrywahls.com/about/about-terry-wahls/.

REPLY
@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

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Fred
Can your primary do a Mayo referral?

REPLY

I would very much appreciate journal articles stating this!

REPLY
@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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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

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Wii insurance cover it?

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@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.

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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.

REPLY
@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

REPLY
@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.

REPLY

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

REPLY

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!

REPLY
@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

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.

REPLY
@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.

REPLY
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