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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iceblue | @iceblue | Oct 6, 2019

In reply to @albiet "Unfortunately I do not . Again would love anyone in nyc to recommend" + (show)

I didn't know the Neurologist I was referred to, but I was able to read other patient reviews before I went to the appointment. Based on what I read it was clear some thought he did not have a great bedside manner, and he is very direct (which I like). It seemed to me that the people who really did NOT like him (and there were a number) did not hear what they wanted or expected to hear. Thankfully I had no pre-conceived ideas about what might be going on, so I was pretty open.

I was very comfortable with his approach. He certainly wasn't warm - but he wasn't cold either - just direct. He provided the information I needed (including a handout), and he answered my questions. I found him to be professional, and would recommend him if asked.

Perhaps you could look up the names of Neurologists in your area and do some online research to find someone you think you may gel with?

albiet | @albiet | Oct 6, 2019

In reply to @rwinney "Not for nothing but I was the reverse of you! Started with chronic pain in neck..." + (show)

@rwinney

Not for nothing but I was the reverse of you!

Started with chronic pain in neck and head. Numbness from shoulder down arm.
No basic treatments or techniques helped. 3 spine surgeons all said no surgery. PCP never understood why with only 2 bulging and 1 herniated cervical disc I was in so much pain.

On to Pain Management for occipital and cervical nerve blocks then radio frequency ablations for 2 years. PM could not understand why I continued to have such burning through my shoulders. I felt aged beyond my 46 years and decrepit.

Neurologist #1 failed to diagnose chronic migraine during all this as he was focused on my neck problems. That too was haunting me.

I passed EMG/Nerve Conduction studies. Ruled out Fibromyalgia with a Rheumatologist. My strength was never an issue. Hmmm...PCP said let's try Cymbalta (my anxiety and patience were thru the roof). Then, let's try gaba, then Lyrica.

I finally said screw Neurologist #1 and found a new one referred by PM who properly diagnosed me with chronic migraine and could not believe no-one else had!!

2 and 1/2 years passed now and more pieces of my body began to act corrupt. I got a weeding injury to my hand. Yes, as in pulling weeds!! I got a walking injury. Yes, God forbid I took a slow calming walk for my migraines. Went to Orthopedic Dr. and xrays were fine, they put me in splint and walking boot.

It progressed to palpitations, out of breath, exhaustion, dizziness, sweats, tingles, zaps, vibrations, sun burn sensations, stabbing pains, weakness etc... Pain, pain, pain.

I went to neurologist #2 and said...IM GOING CRAZY, SOMETHING IS WRONG WITH ME NEUROLOGICALLY AND IF YOU DONT FIGURE IT OUT IM GOING TO MAYO CLINIC!!!!

And FINALLY a skin biopsy was done and SFN was diagnosed with a B12 deficiency. A day late and a dollar short.

Mind you, most of the trouble shooting was my doing. Advocate for your self. You aren't crazy and if you were diagnosed with SFN 10 years ago and it may be acting up now then that's a decent stretch for you but don't rule it out, it can cause havoc.

It's hard and I live in NY but not NYC. Must be tougher with so many Dr choices. I don't see why you don't have the right for a biopsy test again unless insurance denied. I hope you can find the help you need soon. Don't settle.

My confusion with SFN is navigating it's wrath verses knowing if something new presents itself. Confusing!
I will attach a statement from the book my Nurologist helped to write on SFN which concludes possible confusions.

I wish you well.
Rachel

Jump to this post

I am so happy you figured out what was wrong? Are you pain free after finding that the b12 was low? I unfortunately had most tests again but not sure why they didn’t do the biopsy over? Would doing the biopsy over mean anything?

Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019

In reply to @rwinney "Not for nothing but I was the reverse of you! Started with chronic pain in neck..." + (show)

@rwinney

Not for nothing but I was the reverse of you!

Neurologist #1 failed to diagnose chronic migraine during all this as he was focused on my neck problems. That too was haunting me.

I finally said screw Neurologist #1 and found a new one referred by PM who properly diagnosed me with chronic migraine and could not believe no-one else had!!

It progressed to palpitations, out of breath, exhaustion, dizziness, sweats, tingles, zaps, vibrations, sun burn sensations, stabbing pains, weakness etc... Pain, pain, pain.

I went to neurologist #2 and said...IM GOING CRAZY, SOMETHING IS WRONG WITH ME NEUROLOGICALLY AND IF YOU DONT FIGURE IT OUT IM GOING TO MAYO CLINIC!!!!

And FINALLY a skin biopsy was done and SFN was diagnosed with a B12 deficiency. A day late and a dollar short.

I wish you well.
Rachel

Jump to this post

I guess once things get ruled out based on hard core evidence of Xray, CT, MRI, blood tests...then SFN is the go to.

albiet | @albiet | Oct 6, 2019

In reply to @iceblue "I didn't know the Neurologist I was referred to, but I was able to read other..." + (show)

The neurologist I went back to in 2018 and early 2019 was very odd to me. How do someone you diagnosed with SFN 10 years earlier, see u 3 times with increasing issues and pain and they tell you there is nothing you can do for them or even refer to an internist to. I had no idea SFN could do any of this, if that is the case.

Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019

In reply to @albiet "I am so happy you figured out what was wrong? Are you pain free after finding..." + (show)

Heck no! However, the specific deficiency symptoms have subsided. Palpitations, breathing, dizzy, etc... they are mild and few and far between. The nerve damage had been done already though.

albiet | @albiet | Oct 6, 2019

In reply to @rwinney "I guess once things get ruled out based on hard core evidence of Xray, CT, MRI,..." + (show)

@rwhinney thank you for that. Can I ask what the list of symptoms are that they refer to?

Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019

In reply to @iceblue "I didn't know the Neurologist I was referred to, but I was able to read other..." + (show)

Same scenario with me and my neuro! Are you sure your Dr isn't Charles Argoff?! Wow!

albiet | @albiet | Oct 6, 2019

In reply to @rwinney "Heck no! However, the specific deficiency symptoms have subsided. Palpitations, breathing, dizzy, etc... they are mild..." + (show)

@ 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?

Rachel, Volunteer Mentor | @rwinney | Oct 6, 2019

In reply to @albiet "@rwhinney thank you for that. Can I ask what the list of symptoms are that they..." + (show)

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.