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

Liked by Leonard

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

Liked by Leonard

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.

Liked by Leonard

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
@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

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

REPLY
@steeldove

@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.

Jump to this post

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

Liked by Leonard

REPLY
@albiet

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

Jump to this post

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?

REPLY
@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?

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

20191006_182910

REPLY
@iceblue

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?

Jump to this post

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.

REPLY
@albiet

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?

Jump to this post

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.

REPLY
@rwinney

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

Jump to this post

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

Liked by Leonard, rwinney

REPLY
@iceblue

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?

Jump to this post

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

Liked by Leonard, iceblue

REPLY
@rwinney

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.

Jump to this post

@ 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?

Liked by Leonard

REPLY
@albiet

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

Jump to this post

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.

20191006_185123

20191006_185134

REPLY
@rwinney

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

Jump to this post

Did you continue to go to him after he found your SFN when he treated you like that?

Liked by Leonard

REPLY
Please login or register to post a reply.