Small Fiber Neuropathy

Has anyone had antibody testing for their SFN? I tested positive for IgG vs FGFR3, and have found very little information on this type of autoimmune polyneuropathy.

Hello @donnap, welcome to Mayo Clinic Connect. I was able to find some information that may be helpful. One of the tools I use that helps find medical research type articles is Google Scholar (https://scholar.google.com/).

Treatment for IgG and IgA paraproteinaemic neuropathy
-- https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005376.pub3/full

IgG monoclonal paraproteinaemia and peripheral neuropathy PDF (Journal of Neurology, Neurosurgery, and Psychiatry 1993;56:52-57)
-- https://jnnp.bmj.com/content/jnnp/56/1/52.full.pdf

NIH - Monoclonal Gammopathy Associated Peripheral Neuropathy: Diagnosis and Management
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573223/

Have you been diagnosed with small fiber neuropathy? Are you able to share any of your symptoms?

Thank you John. My neuropathy symptoms started in my hands. In 2014, I was diagnosed with bilateral Thoracic Outlet Syndrome. I have had surgery for this on both sides. The surgeries didn't help, so In 2015 I had surgery to relocate the ulnar nerves in both arms. (the thought was that I had a secondary compression at the elbow causing the neuropathy.) Those surgeries were also unsuccessful. Since that time, my neuropathy has been progressing to my chest, trunk, back, buttocks, and lower extremities. I have lots pain- mainly a constant burning, but also some shooting and throbbing when I overuse my hands. (some of my issues may be a result of the surgeries that I had.) I have a lot of trouble sleeping, because the pain to my tailbone is worse with lying down. I also have difficulty sleeping on my sides due to the previous surgeries)
I went to a new pain doctor 3/2018 who did the skin biopsy which diagnosed the small fiber neuropathy. The third neurologist I went to sent the right lab tests to Washington University, and found that I had elevated IgG vs FGFR3. (this was August, 2018)
I just finished my 3rd round of IVIG last week. I have been having mixed results. My first round was for a full week at the end of August. My second round was for 2 days the second week of December, 3rd round was Jan. 10th and 11th.

Hello @donnap, there is another discussion you might be interested in to learn what others use to treat their neuropathy symptoms. @jenniferhunter may have some suggestions for you. She mentions thoracic outlet syndrome in the follow discussion post.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=51#comment-254367

What is IVIG?

Hello, @bruces - I believe the reference is to intravenous immunoglobulin (IVIg).

IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

Thank you so much for the information, I’ve been diagnosed with SFN in the last year. it has stopped my life. The onset has been very fast within 6 months from slight tingling in my hands and feet to total numb legs and arms. SFN seems to now be consuming my torso including bowel and bladder control. This may seem insignificant in comparison to the pain we’re all going through BUT I’m curious if other people are seeing hair loss. I was a very furry guy, with thick hair covering all of me. But within one month most all my body hair has fallen out. Have other people experienced this? And if you have has any one had it return at any point?

Well @bruces, you are absolutely not alone. The loss of body hair is confirmation of neuropathy. I too have severe SFN. The other symptoms you mention sound like autonomic neuropathy (AN) which is also what I have. It was several years for my AN symptoms to hit me. But when they did, it too was life altering. Within no time I suffered extreme constipation due to a loss of motility. But the life altering symptom was neurogenic orthostatic hypotension (nOH). Anytime I bend down or even turn my head abruptly, my blood pressure drops to dangerous levels. A couple of months back I was hospitalized with facial lacerations. After sitting in a wheelchair for over half an hour, my measured BP was 72/48. My body has acclimated to these extremes. With normal OH, one's BP usually returns to normal once seated. However, with nOH (symptoms of AN), my BP stays at these extreme lows even when seated. Along with the extreme pain from SFN, nOH severely limits my mobility.

For the last 5 years I have seldom left my recliner. It is just too dangerous and difficult to leave the relative safety of my living room. I have taken to sleeping on my recliner because with the meds I'm taking for the nOH, it is too dangerous to ever lay flat. I believe the requirement is to maintain an incline of 15 degrees. If I lay flat, my BP will shoot through the roof immediately.

Again, you are not alone and there are ways to improve your life by lowering your pain. Two months ago, I had a neurotransmitter surgically implanted in my back. The device has brought my pain, which is especially bad at night, down from a 9+ to a 3 or 4. For the first time in years I am feeling relief from my constant pain. You may want to discuss this with your physicians.

Hello @bruces and @diknzn. I started noticing that my fine arm hair, seemed to just disappear on me throughout the last year. I was diagnosed with SFN in 2015 and Autonomic Neuropathy in 2018. The symptoms @bruces has described, pretty much match the ones I have been battling (OH in particular). It has been very challenging and causes me anxiety, due to the many back problems I have. The neurotransmitter that you had implanted, is that the SCS device or something different? Thank you all for sharing. It helps so much to know I am not alone with the many problems that I do my best, to work through each day.