1. < Neuropathy

Small Fiber Neuropathy?

Posted by elsa @elsa, Jan 23, 2019

Hello. I'm a 64 year old woman who has a complex medical history. I have relapsing-remitting MS (diagnosed in 2006, well-controlled; on Copaxone). I also ruptured my L5-S6 disc in 2009, subsequently had a microdiscectomy during which the surgeon tore the dura. Since the surgery, I developed chronic pain which worsened with time. Last March I graduated from Mayo's 3-week pain management program. Since then I no longer take any opiates or benzodiazepines which has been a huge step for the better.
That said, in the past few months my pain has spread and changed in nature. I now have bilateral burning sensations in my buttocks and hamstrings. This new pain seems to be burning in the outer part of my skin. It burns whenever I'm sitting or lying down. Any pressure at all on these areas causes really awful burning sensations. I am wondering if I have developed small fiber neuropathy.
Questions: 1) Does my description of this new pressure-sensitive, burning pain sound like it's SFN? 2) I notice that there is some discussion about immunity and SFN. Could my having MS (an autoimmune disease) somehow be causal in the development of SFN? 3) Can anyone recommend a doctor at Mayo in Rochester who could examine me and do the proper tests to hopefully diagnose what's going on?
Thank you much!!
--Elsa

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019
In reply to @steeldove "@rwinney Interesting that Dr. Glenn Lopate is listed as one of the authors of the book..." + (show)
@steeldove

@rwinney Interesting that Dr. Glenn Lopate is listed as one of the authors of the book you found so helpful. I had an appointment last year with Dr. Lopate in St. Louis, Missouri, and found it a total waste of time and money. He most certainly is not terribly knowledgeable about SFN.

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That is interesting. Glad Argoff is my Neurologist.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019
In reply to @albiet "Helen, Thank you. I am so confused and not know where to turn next. While I..." + (show)
@albiet

Helen,
Thank you. I am so confused and not know where to turn next. While I can see many possibilities, not knowing my next move is very emotional draining. Reading through these posts both helps and further confuses. Hoping I see a shining light.

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https://www.ninds.nih.gov/

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1 reply
steeldove | @steeldove | Oct 6, 2019
In reply to @rwinney "Oh my goodness, there are many. If your Google savvy, I'd get to researching or if..." + (show)
@rwinney

Oh my goodness, there are many. If your Google savvy, I'd get to researching or if you use Amazon and can order this book, it's $19.95 and for me was like "SFN for Dummies". It remains my go to, my SFN bible.

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For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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4 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019
In reply to @rwinney "https://www.ninds.nih.gov/" + (show)

Search
"Peripheral Neuropathy Fact Sheet" once you open link. Alot of clear info.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019
In reply to @steeldove "For those willing to wade through a medical article, here's one published in the latest edition..." + (show)
@steeldove

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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I've been keeping an eye on Dr. Oaklander as well!

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jager5210 | @jager5210 | Oct 6, 2019
In reply to @steeldove "For those willing to wade through a medical article, here's one published in the latest edition..." + (show)
@steeldove

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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Like many here, neurologists just are not working for me. So, try listening to Anthony Williams found in this link...or you can google him on utube or FB
https://www.hayhousehealsummit.com/welcome

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Oct 6, 2019
In reply to @albiet "Helen, Thank you. I am so confused and not know where to turn next. While I..." + (show)
@albiet

Helen,
Thank you. I am so confused and not know where to turn next. While I can see many possibilities, not knowing my next move is very emotional draining. Reading through these posts both helps and further confuses. Hoping I see a shining light.

Jump to this post

@albiet

Tell me about it! Before I began to feel tingling in my feet and legs, and saw a great neurologist (now retired, unfortunately), I had been dealing with major depression, anxiety, PTSD, and suicidal ideation. Adding neuropathy to all of that has been a long, hard battle. I didn't mind the tingling so much, but when I started to feel burning pain, I think my mental health was set back for a while. Seeing the light after being in a dark hole was the beginning of recovery. I hope you find answers that will give light to your path.

Jim

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iceblue | @iceblue | Oct 7, 2019
In reply to @albiet "@ Whitney, I didn’t realized those were symptoms. Is vibrations throughout arms and legs , chattering..." + (show)
@albiet

@ Whitney, I didn’t realized those were symptoms. Is vibrations throughout arms and legs , chattering teeth or muscles/ skin feeling tight symptoms of SFN also?

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For what it's worth, aside from burning feet, pins/needles, and occasional zaps - the intermittent sensations I've experienced that my neurologist confirmed are due to SFN include:

* Sense that the skin on the ball of my feet had thickened (calluses) - although when I felt the area with my hand it clearly has not.
* A feeling in my calves as if the muscles were popping like popcorn. Not painful - just super irritating.

I'm still waiting for the Gabapentin to let me know whether the aching/stiffness in my feet and ankles is related to SFN or if it's something else. I can say that a little more than one week in, and just 2 days on 200 mg (taking it at night only) the aching and stiffness does seem to be reduced - but I will take a wait and see approach to see if it's the Gabapentin or short term coincidence.

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1 reply
burningfeetinphoenix | @burningfeetinphoenix | Oct 7, 2019
In reply to @steeldove "For those willing to wade through a medical article, here's one published in the latest edition..." + (show)
@steeldove

For those willing to wade through a medical article, here's one published in the latest edition of the Journal of the American Medical Association Neurology. https://neuropathycommons.org/sites/default/files/Oaklander_Nolano_SFN_2019.pdf It's a long article, but you may want to download it or print it to share with your doctor.

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@steeldove..Thanks for great article! Just read it as I am awake at about 1:00 am with my feet "on fire"". Pam

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Leonard | @jakedduck1 | Oct 7, 2019
In reply to @jager5210 "Like many here, neurologists just are not working for me. So, try listening to Anthony Williams..." + (show)
@jager5210

Like many here, neurologists just are not working for me. So, try listening to Anthony Williams found in this link...or you can google him on utube or FB
https://www.hayhousehealsummit.com/welcome

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@jager5210
What type treatment do they recommend? I went to your link but they require me to join. I am required to provide all my information and must agree to receive emails. I get more emails than I want now. I would think if it was a reputable site they would provide at least some of their information and give one the option of joining. I don’t blindly give out my personal information.
Jake

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