Non-Length Dependent Small Fiber Neuropathy

Yes, I have SFN, but wonder of wonders, I have no pain. Mine was brought on by Sjogren's Disease. But it did effect my large fibers (autonomic nervous sistem) and now my feet don't know where they are. (I run into doors alot.) No numbness, either. It took months for my Spanish Mustang to get used to the new me.

@sf2021 My GP just diagnosed me with this yesterday. I am waiting on all the blood work to come back that may rule out any autoimmune disorders. My pain and off sensations are localized to my left cheek and the middle front of left thigh. It is extremely odd to me how it only affects two completely unrelated areas. I can't comment on your questions but interested in how you are now coping since some time has passed.

@ahungness
Hi, I believe I have non-length dependent small fiber neuropathy. Mine travels to different parts of the body - sometimes left hand, arm, rib cage area but most consistently left side of the face and my tongue. My pain level has subsided (not gone) over the years (keeping my fingers crossed) and got off all meds (gabapentin and duloxetine). I manage it through acupuncture, diet and exercise. I hope this helps. It can get better.

@sf2021 mine comes and goes, thankfully not constant, and at this time doesn't require meds. I'm glad you found relief.

I was diagnosed about two years ago with this small fiber neuropathy. It’s affected both legs and my feet, and my calves on my legs are burning a lot
Is there any treatment that will help Alleviate some of the pain and burning. I’ve tried multiple pain medication’s, which did not work in just about every pain cream on the market.

@suetex
I was diagnosed with small fiber neuropathy in 1996. I also have Sjogrens Disease, Rheumatoid Arthritis and Connective Tissue Disease. I had all of the symptoms of small fiber neuropathy for years. Now I have both small and large fiber neuropathy and my legs are numb from the knees on down. I can't feel the bottom of my feet anymore so it's dangerous for me to try to go up and down the basement steps or any steps. I've had two bad falls down our basement stairs. I use a cane because my feet are so numb especially when I leave the house. I have no reflexes in either of my knees or ankles nothing. I can't begin to say how much Sjogrens Disease has destroyed my life.

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@mummers59 You certainly have got it badly. Have you tried IvIg?

You are correct that it is relatively rare. I was diagnosed with idiopathic non-length dependent SFN about 6 years ago, which started out as a slight numbness in my fingertips and toes. Since then, my diagnosis has been re-labeled as sensory ganglionopathy, which may be due to cancer, Sjogren's, undiagnosed Lyme disease for 2 1/2 years, or all of the above. I currently have numbness, tingling, and burning pretty much everywhere I have skin, including burning tongue/mouth, and facial numbness, even my teeth. The interesting thing is that I have had no motor impairment, which is more typical for sensory ganglionopathy (not that I'm complaining about that). Progression has been very slow but inexorable. I am currently on IVIg and rituxan. IVIg was started 2 years ago and has helped greatly with brain fog and fatigue, but not much else. Rituxan helps with dysautonomia, particularly high heart rate and blood pressure, but not enough in my opinion. I'm not sure what else to tell you. It's a hard condition to get a diagnostic handle on (the only way to confirm sensory ganglionopathy is to do an autopsy, which I am obviously reluctant to undergo at present, ha, ha) and current treatment options have quite limited effectiveness. There are always new discoveries for treating autoimmune conditions coming online, if I can hold on long enough.

@stuetex
No I haven't done Ivig. I'll be seeing my Neurologist this week and I'm going to talk to her about doing EMG on my legs and arms because I haven't had one in a while plus she has never done one on me. I do believe Ivig would help me. I'll post what happens.