non-length dependent 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 group.

@johnbishop

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?

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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.

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@gator66

Ah, finally I see that someone else has symptoms on the face and tongue. Me too. Care to share your treatments?

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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.

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@jaijai

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.

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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?

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