non-length dependent neuropathy.

Posted by kathleen123 @kathleen123, Feb 22 10:52pm

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.

Thanks for starting this discussion @kathleen123. You bring up an excellent point about not a lot being known about non-length dependent neuropathy, especially by us patients with neuropathy. Here are some scholarly type articles that may help us learn more about non-length dependent neuropathy.

– Non-length-dependent and length-dependent small-fiber neuropathies associated with tumor necrosis factor (TNF)-inhibitor therapy in patients with rheumatoid arthritis: Expanding the spectrum of neurological disease associated with TNF-inhibitors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4605274/
– Longitudinal Assessment of Small Fiber Neuropathy – Evidence of a Non–Length-Dependent Distal Axonopathy: https://jamanetwork.com/journals/jamaneurology/fullarticle/2511289
– Is Non-Length-Dependant Small Fiber Sensory Neuropathy an Inflammatory Neuropathy?: https://n.neurology.org/content/80/7_Supplement/P01.140
– "Feb 27, 2019 — Rarely, a non-length-dependent neuropathy manifests over the trunk, face, proximal limbs, or other focal areas. Symptoms of SFN may differ …" – Small Fiber Neuropathy Symptoms and Causes: https://www.news-medical.net/health/Small-Fiber-Neuropathy-Symptoms-and-Causes.aspx

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I read through these. Thanks. I just wish we knew more.

When I was first diagnosed (more than 10 years ago) and then got a second opinion, I asked my neurologist to refer me to the Mayo but the Mayo refused to see me. Said after reviewing my records they didn’t think there was anything more they could offer me. From what I read it seems like that is probably still the case.

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@kathleen123

I read through these. Thanks. I just wish we knew more.

When I was first diagnosed (more than 10 years ago) and then got a second opinion, I asked my neurologist to refer me to the Mayo but the Mayo refused to see me. Said after reviewing my records they didn’t think there was anything more they could offer me. From what I read it seems like that is probably still the case.

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Hi @kathleen123 and @johnbishop, I have non-lenght dependent SFN. I also have markers from Sjogren and Lupus. I was first tested for SFN 9-2018, and the results was negative. Was tested again two weeks ago, and now the test was positive. I will have a biopsy in april to confirm the diagnosis. So my neurologist and rheumatologist believe that the fiber destructions are caused by my immune sstem. I have occipital and trigeminal nerver pain, I have pain in my left hand and arm, not somuch on the right. I have tingling in both thingt and right foot. so you are not alone….

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@ncameron

Hi @kathleen123 and @johnbishop, I have non-lenght dependent SFN. I also have markers from Sjogren and Lupus. I was first tested for SFN 9-2018, and the results was negative. Was tested again two weeks ago, and now the test was positive. I will have a biopsy in april to confirm the diagnosis. So my neurologist and rheumatologist believe that the fiber destructions are caused by my immune sstem. I have occipital and trigeminal nerver pain, I have pain in my left hand and arm, not somuch on the right. I have tingling in both thingt and right foot. so you are not alone….

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I have had some autoimmune markers as well going back 40 years and was forced to retire early because of a pain syndrome I developed after cataract surgery. For many years afterwards I had to live in a dark room, couldn’t read or watch tv. Still can tolerate very little light or eye use. Thanks heavens for text to speech. What upsets me most is physicians who don’t “get” pain syndromes and get perturbed when you aren’t compliant with their recommendations that you know you can’t tolerate. Not to mention not being able to get treatments for conditions because the pain from the tx will be intolerable. I wish you the best.

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I think it is amazing that we live in this wonderful country but when we need some pain management it is unfortunately often treated as an addiction. I hope you have good doctors now that listen to you.

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@ncameron

Hi @kathleen123 and @johnbishop, I have non-lenght dependent SFN. I also have markers from Sjogren and Lupus. I was first tested for SFN 9-2018, and the results was negative. Was tested again two weeks ago, and now the test was positive. I will have a biopsy in april to confirm the diagnosis. So my neurologist and rheumatologist believe that the fiber destructions are caused by my immune sstem. I have occipital and trigeminal nerver pain, I have pain in my left hand and arm, not somuch on the right. I have tingling in both thingt and right foot. so you are not alone….

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Hi. I have similar symptoms which include my face (more on the left side) and my tongue in addition to my limbs. I am in the beginning stage (idiopathic) of this illness. Have the symptoms gotten worse over years? If so, how fast did they progress? Thanks very much.

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I was diagnosed in 2010. The progress was relatively slow at first. Even now my face, mouth, ear, nose scalp and eye discomfort is not very bad usually. My limb pain, numbness, tingling, burning and pins and needles have gotten substantially worse in the past year or so.

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@kathleen123

I was diagnosed in 2010. The progress was relatively slow at first. Even now my face, mouth, ear, nose scalp and eye discomfort is not very bad usually. My limb pain, numbness, tingling, burning and pins and needles have gotten substantially worse in the past year or so.

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Kathleen123. Have you found anything at all that helps the limb nerve and tingling. I was diagnosed 2015. Initially just mild in toes and feet but becoming more intense and progressing to my knee. More severe on left leg. Nothing seems to help and I am limited due to contraindications with Eliquis. Thank you 😊

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@dijak

Kathleen123. Have you found anything at all that helps the limb nerve and tingling. I was diagnosed 2015. Initially just mild in toes and feet but becoming more intense and progressing to my knee. More severe on left leg. Nothing seems to help and I am limited due to contraindications with Eliquis. Thank you 😊

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Hello @dijak, Welcome to Mayo Clinic Connect. @kathleen123 may not have seen your reply and question to her post so I added her Connect member name with the @ sign so that she will receive an email notification and hopefully can share what helps with the limb nerve and tingling. There is another discussion you might want to join to learn what others have shared helps their neuropathy.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Can you share what previous treatments you have tried and if they provided any relief?

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@sf2021

Hi. I have similar symptoms which include my face (more on the left side) and my tongue in addition to my limbs. I am in the beginning stage (idiopathic) of this illness. Have the symptoms gotten worse over years? If so, how fast did they progress? Thanks very much.

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Hi @sf2021, Welcome to Connect. I posted a few scholarly articles on non-length dependent SFN earlier in the discussion that you might find helpful here – https://connect.mayoclinic.org/discussion/non-length-dependent-neuropathy/?pg=1#comment-465250

You ask some really good questions which we've all thought about after we were diagnosed with neuropathy. I'm not sure anyone can give you an answer but we wall can share our experiences. Myself and others have shared their journey with neuropathy in another discussion here – Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your diagnosis and any tests or treatments you have tried?

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@sf2021

Hi. I have similar symptoms which include my face (more on the left side) and my tongue in addition to my limbs. I am in the beginning stage (idiopathic) of this illness. Have the symptoms gotten worse over years? If so, how fast did they progress? Thanks very much.

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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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@dijak

Kathleen123. Have you found anything at all that helps the limb nerve and tingling. I was diagnosed 2015. Initially just mild in toes and feet but becoming more intense and progressing to my knee. More severe on left leg. Nothing seems to help and I am limited due to contraindications with Eliquis. Thank you 😊

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Care to elaborate on what you can't take since you are on Eliquis? I'm in the same kettle of fish.

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