Non-Length Dependent Small Fiber Neuropathy

Posted by kathleen123 @kathleen123, Feb 22, 2021

there is much discussion of PN but seldom is much said about non-length dependent neuropathy. I guess it must be relatively rare. The condition affects all different parts of the body. I think it is usually idiopathic as is mine is. I was diagnosed with it more than 10 years ago. I’d like to hear from others with this type of small fiber neuropathy.

Interested in more discussions like this? Go to the Neuropathy Support Group.

gator66 | @gator66 | Mar 22, 2021

In reply to @sf2021 "Idiopathic, I wish I knew what is causing it. I am most concerned about timeline and..." + (show)

me too

quentin123 | @quentin123 | Mar 24, 2021

In reply to @sf2021 "Yes, my tongue and the roof of the tongue tingle which comes and goes throughout the..." + (show)

HI...Omg.....i'm David from Australia. I have been referred to a neurologist for diagnosis of non length small fibre neuropathy. I too have the tingling in the face, as well as burning and tingling in extremiites. I hope to talk to someone with similar symptoms, pending my diagnosis.

John, Volunteer Mentor | @johnbishop | Mar 25, 2021

In reply to @quentin123 "HI...Omg.....i'm David from Australia. I have been referred to a neurologist for diagnosis of non length..." + (show)

Hello @quentin123, Welcome to Mayo Clinic Connect. I'm happy to hear you have an upcoming appointment with a neurologist who hopefully will be able to provide a diagnosis and a treatment plan. Waiting can be hard but I think it can give us a little more time to learn more about our condition so that we can ask better questions from our doctors and care team. Here are a couple of discussions where members have posted symptoms similar to yours.

- Undiagnosed, numbness, tingling, Muscle weakness and more: https://connect.mayoclinic.org/discussion/undiagnosed-numbness-tingling-muscle-weakness-and-more/
- Neuropathy and other strange symptoms: https://connect.mayoclinic.org/discussion/neuropathy-and-other-strange-symptoms/

Here is an article that you might find helpful for more information:
- Why do I feel tingling in my face?: https://www.medicalnewstoday.com/articles/325975

Can you let us know how your appointment with the neurologist goes?

quentin123 | @quentin123 | Mar 26, 2021

In reply to @johnbishop "Hello @quentin123, Welcome to Mayo Clinic Connect. I'm happy to hear you have an upcoming appointment..." + (show)

Thank you John for such a nice response. it's been a long search and only now my symptoms are increasing more rapidly across my body, the picture is becoming clearer to me. Frustratingly now waiting for a neurologist to confirm what i fear.

jaijai | @jaijai | May 3, 2022

In reply to @gator66 "Ah, finally I see that someone else has symptoms on the face and tongue. Me too...." + (show)

My first symptom was a tingly tongue. My PCP told me I was hypersensitive. Three years later, I finally received a diagnosis of idiopathic NLD-SFN. It’s an adventure! It does scramble across my face and scalp at times.

John, Volunteer Mentor | @johnbishop | May 4, 2022

In reply to @jaijai "My first symptom was a tingly tongue. My PCP told me I was hypersensitive. Three years..." + (show)

Hello @jaijai, I would like to add my welcome to Connect along with @gator66, @quentin123, @sf2021, @kathleen123 and others. There seems to be a lot that is not known about this condition and it's good to learn what has helped others. Here are a couple of articles on NLD-SFN that may shed some light on the difficulty of this condition.

-- 2021 - Non-length-dependent small fiber neuropathy: Not a matter of stockings and gloves: https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.27379
-- 2010 - Non-length dependent small fiber neuropathy. A prospective case series: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1529-8027.2010.00252.x

Did your doctor or neurologist suggest a treatment that helps?

exitframeleft | @exitframeleft | Sep 26, 2022

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

nitsirk | @nitsirk | Sep 27, 2022

In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)

Hi, Sounds similar to mine, which is Wartenbergs Migratory Sensory Neuropathy, a catch all for whats left after ruling everything else out! Mine is very likely autoimmune just going by medical history. Gabapentin didnt help me at all, but mucked up my speech! I am currently slowly switching from the general pain meds/antidepressants used for neuropathy to medical cannabis. Ive had it for 17 years, and its relapsing/remitting. Acupuncture has helped a lot too, especially when one nerve branch gets too out of control. I also get crawling, itching, numbness, hot/cold patches etc etc. Mine started in my feet, but can now be randomly anywhere. I just tend to think that 400 years ago I would either be being exorcised or burnt at the stake 🤣

djmvd1993 | @djmvd1993 | Sep 27, 2022

In reply to @exitframeleft "Non-Length Dependent SFN- who else has this diagnosis? Recently DX with this definitively from skin biopsy...." + (show)

Who is your neurologist? I live in this area and don’t know anyone who specializes in SFN.

amyj2022 | @amyj2022 | Sep 27, 2022

In reply to @nitsirk "Hi, Sounds similar to mine, which is Wartenbergs Migratory Sensory Neuropathy, a catch all for whats..." + (show)

I understand the feeling, you mention using medical cannabis, I live in a state that very much discourages this option. Do you get a prescription for yours? I feel it would help since my box of lotions, gels etc do very little. Lidocaine seems to help off and on, so does Topricin, but nothing helps enough.