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

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@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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Vibrations, yes. My calf muscles felt like lead bricks. Teeth, I can not attest to. Each person and their symptoms may vary.

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@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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If you want more direct info from personal experiences you are right where you need to be. As mentioned by @steeldove, read through posts on Connect. Important to remember that each experience can be unique but it always useful knowledge.

Liked by Lisa Lucier, Leonard

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Yes I did because I believe he is a brilliant man despite his lacking bedside manner at times.

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@rwinney

Yes I did because I believe he is a brilliant man despite his lacking bedside manner at times.

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Working with Drs can be a 2 way street and mutual respect is important if you can get to that point. If not, move on.

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@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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albeit, your symptoms could be something else, they don’t sound like typical SFN although there are many and can vary from person to person. If you type in your symptoms using your search engine you’ll find many possible health issues that can cause them. Hope this helps. Helen

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@helennicola

albeit, your symptoms could be something else, they don’t sound like typical SFN although there are many and can vary from person to person. If you type in your symptoms using your search engine you’ll find many possible health issues that can cause them. Hope this helps. Helen

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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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@albiet

The issue is How do I know is SFN is causing this? Also is the other website you recommend, affiliated with mayo?

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@albiet Causing what? SFN and other forms of neuropathy cause all sorts of symptoms. NeuropathyCommons,org originated in Boston I think, and is not affiliated with Mayo Clinic. You might want to consider trying to get an appointment with Dr. Louise Oaklander in Boston, as she is often regarded as the expert in SFN.

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@steeldove

@albiet Causing what? SFN and other forms of neuropathy cause all sorts of symptoms. NeuropathyCommons,org originated in Boston I think, and is not affiliated with Mayo Clinic. You might want to consider trying to get an appointment with Dr. Louise Oaklander in Boston, as she is often regarded as the expert in SFN.

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I called her office a few weeks back and was told she does not take new patients.

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@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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@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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@albiet

I called her office a few weeks back and was told she does not take new patients.

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@albiet Did you ask if there is another doctor affiliated with Dr. Oaklander to whom they could refer you for an appointment concerning SFN?

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@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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@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

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

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@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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