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 group.

@albiet

I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

Jump to this post

Hi @albiet, I'm sorry to hear you are in a bad place. Neuropathy and it's sypmtoms can be confusing and cause a lot of anxiety along with the pain. There is another discussion with a similar name where your questions will have more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

Have you discussed your latest symptoms with your doctor? I'm wondering if the hernations you mentioned from the car accident may be causing nerve compression?

There is another discussion that you may find helpful
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
@albiet

I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

Jump to this post

I saw the neuro who 10 years earlier tested me for SFN . I saw her 3 times – last oct, nov and February 2019. She took neck mri and another test that stuck needles in my leg and I did PT . Nothing helped and things get worse . She told me very coldly nothing She could do, not even recommend a internist or anyone else to start with.
I ended up seeing 2 other neuros, the first was a dr that does neuropathy and he took some tests and then asked me for a copy of the SFN test from 10 years earlier. None of his tests showed anything and said if I want some Neurontin or lyrics he could do that. In March Then I saw also 10 years prior and she took a brain mri and thoracic, but never looked at, just the memos. It did not show ms legions but thought I should go to an ms dr.
I’m basically sitting with an appointment for an ms dr on Tuesday but thinking of canceling since I’m not going back to the dr that recommended going to him. Also I’m concerned as he is in the same practice as the neuropathy dr. I’m totally confused as this continues nonstop. Help.

REPLY
@albiet

I saw the neuro who 10 years earlier tested me for SFN . I saw her 3 times – last oct, nov and February 2019. She took neck mri and another test that stuck needles in my leg and I did PT . Nothing helped and things get worse . She told me very coldly nothing She could do, not even recommend a internist or anyone else to start with.
I ended up seeing 2 other neuros, the first was a dr that does neuropathy and he took some tests and then asked me for a copy of the SFN test from 10 years earlier. None of his tests showed anything and said if I want some Neurontin or lyrics he could do that. In March Then I saw also 10 years prior and she took a brain mri and thoracic, but never looked at, just the memos. It did not show ms legions but thought I should go to an ms dr.
I’m basically sitting with an appointment for an ms dr on Tuesday but thinking of canceling since I’m not going back to the dr that recommended going to him. Also I’m concerned as he is in the same practice as the neuropathy dr. I’m totally confused as this continues nonstop. Help.

Jump to this post

One other thing, is there anyone here from nyc. If so please lmk and pm today. Thank you

REPLY

I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

REPLY

Hi @albiet you may have noticed I moved your post to this existing discussion on Small Fiber Neuropathy per the suggestion of @johnbishop so that your post can be seen by more people with similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

As you said, it sounds so confusing to be in this situation. @burningfeetphoenix @rwinney and @somisgirl may be able to share their experience and answer your questions.

You mentioned you won't go to the other doctors you have seen so far. Are their other neurologists in the area you could go see?

REPLY

im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

REPLY
@albiet

im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

Jump to this post

@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy

REPLY
@albiet

im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

Jump to this post

@albiet

Have you looked at any University hospital? I went to the one in Portland, OR, because my neurologist said they could do tests that are only done there.
I live in central Oregon, about a 3 hour drive for me.

Jim

REPLY
@steeldove

@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy

Jump to this post

Unfortunately I do not . Again would love anyone in nyc to recommend

REPLY

Jim, not a fan of OHSU. Glad it worked out for you. It has a lot of issues that need working on…

REPLY
@steeldove

@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy

Jump to this post

Steve,
I believe all Those tests were done in 2010 when they tested fir small fiber. In 2019 after the old dr blew me off, I went to a neurologist in another major university hospital. He took a lot of blood work, most of the same that I had in 2010. All came up for the most part fine. He was willing to give me gab or lyrica, but nervous about everything I’ve read. I’m on imipramine now and was also on cymbalta when this started, but not anymore.He also took a cervical mri but said even though herniations , he didn’t think surgery would help. Had a few other tests then gave up going to drs in May . It’s gotten bad as it’s constant, a little better when I walk.

REPLY
@albiet

Steve,
I believe all Those tests were done in 2010 when they tested fir small fiber. In 2019 after the old dr blew me off, I went to a neurologist in another major university hospital. He took a lot of blood work, most of the same that I had in 2010. All came up for the most part fine. He was willing to give me gab or lyrica, but nervous about everything I’ve read. I’m on imipramine now and was also on cymbalta when this started, but not anymore.He also took a cervical mri but said even though herniations , he didn’t think surgery would help. Had a few other tests then gave up going to drs in May . It’s gotten bad as it’s constant, a little better when I walk.

Jump to this post

@albiet That's about all you're going to find with neurologists: offer of Gabapentin, Lyrica, or Cymbalta. They are as lost as we are, as no one really knows what's what with SFN or how to treat it, so save your money and time and do your own research on your body, your SFN. What helps you? What makes it worse? Follow leads on Connect to learn what others have found useful. Also, you might want to poke around on the NeuropathyCommons website.

REPLY
Please sign in or register to post a reply.
  Request Appointment