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

@givinghope

Hi @johnbishop. The article link you shared is right on point. I can tell you from experience the EMG and any other test other than the skin punch biopsy will not give the patient a proper diagnosis. I was sent for multiple EMG’s where they would twist my legs like a pretzel haha until they could get a reading. None of the EMG tests over 3 years ever showed signs of SFN. Only when I sought a second opinion, waited six months for an appointment to have the skin biopsy and the QSART test done, did my life change in a positive way. Please don’t get me wrong, I was less than thrilled with confirmed SFN, however, at least now we had a course of treatment. As I’ve said before, Lyrica works really well for me. Many other meds (Cymbalta, etc) did not. Cannabis helps distract the brain. I encourage everyone with potential SFN to read the link shared by @johnbishop here. While it is from 2009, it is the most comprehensive, understandable article on that topic I’ve seen. I wish you all a positive, pain free day

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Thank you for your input. Good to know I'm not the only one going crazy for proper dx!
I do not tolerate lyrica or any of these anti convulsant meds.
Finding some relief w med marijuana oil and just rcvd salve I believe John recommended from cbd nanomeds. (Smells refreshing as well).
Seeing 3rd neurologist this month. Well be asking for punch skin Biopsy. Can you tell me what that other test is? The QSART, not familiar w it.
Thank you very much,
Claire

@johnbishop

Hello @mellotrout, welcome to Mayo Clinic Connect. Thank you for posting. I think both the EMG and the skin biopsy are useful tools but the punch skin biopsy is more definitive from what I've read. This is just one article I've read in the past that agrees with what you said.

Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy
http://practicalneurology.com/2009/10/PN1009_06.php

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. You can do a Google search for Matthew B Jensen YouTube videos for other neuropathy related videos that give good explanations.

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Hi @johnbishop. The article link you shared is right on point. I can tell you from experience the EMG and any other test other than the skin punch biopsy will not give the patient a proper diagnosis. I was sent for multiple EMG’s where they would twist my legs like a pretzel haha until they could get a reading. None of the EMG tests over 3 years ever showed signs of SFN. Only when I sought a second opinion, waited six months for an appointment to have the skin biopsy and the QSART test done, did my life change in a positive way. Please don’t get me wrong, I was less than thrilled with confirmed SFN, however, at least now we had a course of treatment. As I’ve said before, Lyrica works really well for me. Many other meds (Cymbalta, etc) did not. Cannabis helps distract the brain. I encourage everyone with potential SFN to read the link shared by @johnbishop here. While it is from 2009, it is the most comprehensive, understandable article on that topic I’ve seen. I wish you all a positive, pain free day

Hello @mellotrout, welcome to Mayo Clinic Connect. Thank you for posting. I think both the EMG and the skin biopsy are useful tools but the punch skin biopsy is more definitive from what I've read. This is just one article I've read in the past that agrees with what you said.

Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy
http://practicalneurology.com/2009/10/PN1009_06.php

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. You can do a Google search for Matthew B Jensen YouTube videos for other neuropathy related videos that give good explanations.

@johnbishop

@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

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Hi John,

Unfortunately, an EMG/NCV test/study is unable to objectively and definitively diagnose small fiber neuropathy. Sure, the results may indicate signs of small fiber neuropathy but EMG/NCV tests/studies are best suited for large fiber analysis. A punch skin biospy is really the best way to diagnose small fiber neuropathy.

@cwallen9

That is great info. I am going to the Cleveland Clinic in two weeks to have them look at my SFN. I will convey this info. I also have high inflammation, extremely low vitamin D levels, but my B6 was high. I read that B6 may be high because the body doesn't absorb the B6 due to a gene deformity. Also, what is chelation therapy? Thanks for posting this – it gives me hope.

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No problem. Hope it helps. The chelation therapy is to remove heavy metals from the body. Because i was found to have 4 x the acceptable level of mercury in urine test, they put a Iv in you and let the solution run through the body. Hopefully binds to heavy metals and toxins and excrete them. I did it 10 times, have to wait for the urine tests to see if it worked

Ask you new doctor about IVIG! It is the only thing that will reverse your symptoms if it works for you. Recent study of small fiber neuropathy with no autoimmune or inflammatory markers showed 74% improved with IVIG. That study had 55 hand picked patients. MGH now doing a double blind study to prove IVIG works for small fiber. I was almost in a wheelchair and after IVIG I am walking my dog (slowly) through the woods. A world of difference!

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@mdemo

Just joined this group. I was diagnosed with sfpn about 1.5 years ago. It has been a struggle. This is the first forum i joined to maybe share info/ get info on this disease. I was confirmed via punch biopsy in 3 locations. I saw a couple of top NYC neurologists who did every test and they all came back negative for the cause. I guess i have been put in the idopathic column. That did not sit well with me. I was recommended a real smart imunnologist/ integrative DR that took 30 vials of blood to dig deeper. I was found that my b levels were off despite taking b complex for a while. I was also found to have a lot of inflammation in my body as well, lower d&k vitamins and the biggest surprise was high mercury level via urine test. I immediately had large metal filling removed and started chelation therapy. The dr put me on metanx ( my buddy wasnt absorbing b vitmains) and about 5 more supplements. Vitamin D and K, R- Lipopic acid, Anti inflammatory (curcimin/boswanna/black pepper), high quality EPA and DHA oil, and coq10. Well i started to feel better after a little while. I even came off the lyrica, which wasnt helping. Pain was a 9 and after a while i was at a 2 and sometimes forgetting about my discomfort for longer stretches of time. I had a good 6 months like that with a small flare up recently but even that only gets to a 5 from a 9. Long story short is keep pressing on with your search. I prob will never know the cause, but i did find stuff that was out of whack and prob contributed to this condition. If you find a good DR and get things inline , your can prob get better and start healing the nerves. I still feel some pain at times but i can deal with this if it doesnt get worse. I go back in a couple weeks to recheck mercury level and som other things. Good luck and i hope i can get some more good info off this site and learn some more.

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That is great info. I am going to the Cleveland Clinic in two weeks to have them look at my SFN. I will convey this info. I also have high inflammation, extremely low vitamin D levels, but my B6 was high. I read that B6 may be high because the body doesn't absorb the B6 due to a gene deformity. Also, what is chelation therapy? Thanks for posting this – it gives me hope.

Just joined this group. I was diagnosed with sfpn about 1.5 years ago. It has been a struggle. This is the first forum i joined to maybe share info/ get info on this disease. I was confirmed via punch biopsy in 3 locations. I saw a couple of top NYC neurologists who did every test and they all came back negative for the cause. I guess i have been put in the idopathic column. That did not sit well with me. I was recommended a real smart imunnologist/ integrative DR that took 30 vials of blood to dig deeper. I was found that my b levels were off despite taking b complex for a while. I was also found to have a lot of inflammation in my body as well, lower d&k vitamins and the biggest surprise was high mercury level via urine test. I immediately had large metal filling removed and started chelation therapy. The dr put me on metanx ( my buddy wasnt absorbing b vitmains) and about 5 more supplements. Vitamin D and K, R- Lipopic acid, Anti inflammatory (curcimin/boswanna/black pepper), high quality EPA and DHA oil, and coq10. Well i started to feel better after a little while. I even came off the lyrica, which wasnt helping. Pain was a 9 and after a while i was at a 2 and sometimes forgetting about my discomfort for longer stretches of time. I had a good 6 months like that with a small flare up recently but even that only gets to a 5 from a 9. Long story short is keep pressing on with your search. I prob will never know the cause, but i did find stuff that was out of whack and prob contributed to this condition. If you find a good DR and get things inline , your can prob get better and start healing the nerves. I still feel some pain at times but i can deal with this if it doesnt get worse. I go back in a couple weeks to recheck mercury level and som other things. Good luck and i hope i can get some more good info off this site and learn some more.

@cwallen9

Thanks for the input. I'm sorry to hear you suffer from small fiber neuropathy also. Is there any treatment for your condition? Any pain management medicine and/or techniques that help reduce the pain?

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@cwallen I am somewhat fortunate in that my small fiber PN symptoms are only numbness and some tingling. I don't have the pain with my PN. I do take supplements that help but it's not a cure. Here is a link to the post on Connect where I shared what has helped me and how I found Connect — https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@johnbishop

Hello @cwallen9, welcome to Connect. I was diagnosed with idiopathic small fiber peripheral neuropathy but only through an EMG and I believe the skin biopsy is the more definitive test used. I have no medical training or background but I'm like you in that I like to know what results mean and why. I did find a few references that may help clear it up for you.

The Value of Including Sweat Gland Nerve Fiber Density (SGNFD) Analysis in the Neuropathy Work-up (P6.088)
http://n.neurology.org/content/82/10_Supplement/P6.088

Diagnostic Utility of Sweat Gland Nerve Fiber Density in Small Fiber Neuropathy (P2.111)
http://n.neurology.org/content/90/15_Supplement/P2.111

Epidermal Nerve Fiber Density – Normative Reference Range and Diagnostic Efficiency
https://jamanetwork.com/journals/jamaneurology/fullarticle/774528

Are you able to ask your neurologist what the low sweat gland density numbers mean in layman's terms? Sometimes it may be the easiest answer.

John

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Thanks for the input. I'm sorry to hear you suffer from small fiber neuropathy also. Is there any treatment for your condition? Any pain management medicine and/or techniques that help reduce the pain?

@cwallen9

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?

Jump to this post

Hello @cwallen9, welcome to Connect. I was diagnosed with idiopathic small fiber peripheral neuropathy but only through an EMG and I believe the skin biopsy is the more definitive test used. I have no medical training or background but I'm like you in that I like to know what results mean and why. I did find a few references that may help clear it up for you.

The Value of Including Sweat Gland Nerve Fiber Density (SGNFD) Analysis in the Neuropathy Work-up (P6.088)
http://n.neurology.org/content/82/10_Supplement/P6.088

Diagnostic Utility of Sweat Gland Nerve Fiber Density in Small Fiber Neuropathy (P2.111)
http://n.neurology.org/content/90/15_Supplement/P2.111

Epidermal Nerve Fiber Density – Normative Reference Range and Diagnostic Efficiency
https://jamanetwork.com/journals/jamaneurology/fullarticle/774528

Are you able to ask your neurologist what the low sweat gland density numbers mean in layman's terms? Sometimes it may be the easiest answer.

John

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?

@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.

@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

@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/.

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