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.

@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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Thank you, kathleen123. If you are willing to share, what treatments are taking?

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@johnbishop

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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Hi, John. First I want to thank you for being so diligent and responsive on the forum. You are great.
Mine did not start out with my feet. It started with left side of my face tingling and my left arm and hand. Then it traveled to my feet and my right arm and hand within a month. I have tingling and "stabbing needles" sensation. My tongue started tingling as well. I also have internal "buzzing" sensation especially at night. Went through extensive testing to rule out MS, multiple myeloma, etc.
Right now, my symptoms are not that bad. I am on 300mg gabapentin once per day. I am trying to minimize drugs as much as possible. I've been getting acupuncture which seems to help especially my face. I am worried about how fast this can progress or if there is a possibility it can go away on its own.

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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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Yes, my tongue and the roof of the tongue tingle which comes and goes throughout the day. My face (left side especially) feels tingling and "off". Lately, I also feel pressure (I can't really describe it as I've never felt this before) on the right cheekbone and near the right ear. I am a newbie to this diagnosis. I am on 300mg gabapentin once per day. I also take magnesium, r-lipoic acid and B12. I've been getting acupuncture (7 sessions so far) and it seems to help especially my face tingling. Of course, I am not sure if this is 100% attributable to acupuncture but I will take any improvement I can get. There seems to be very little information out there on progression. If anyone can share their experience, I'd really appreciate it.

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@sf2021

Hi, John. First I want to thank you for being so diligent and responsive on the forum. You are great.
Mine did not start out with my feet. It started with left side of my face tingling and my left arm and hand. Then it traveled to my feet and my right arm and hand within a month. I have tingling and "stabbing needles" sensation. My tongue started tingling as well. I also have internal "buzzing" sensation especially at night. Went through extensive testing to rule out MS, multiple myeloma, etc.
Right now, my symptoms are not that bad. I am on 300mg gabapentin once per day. I am trying to minimize drugs as much as possible. I've been getting acupuncture which seems to help especially my face. I am worried about how fast this can progress or if there is a possibility it can go away on its own.

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@sf2021 I'm pretty sure I would have the same concerns as you do if I had the same symptoms. You mentioned that you've had extensive tests to rule out a few conditions like MS and multiple myeloma. I read in your other post that you have lately felt pressure on the right cheekbone near the ear. Have you discussed the new symptoms with your doctor? Just wondering if it may be providing more information to help with a diagnosis.

What to know about pressure in the head: https://www.medicalnewstoday.com/articles/326531#causes-and-other-symptoms

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@sf2021

Yes, my tongue and the roof of the tongue tingle which comes and goes throughout the day. My face (left side especially) feels tingling and "off". Lately, I also feel pressure (I can't really describe it as I've never felt this before) on the right cheekbone and near the right ear. I am a newbie to this diagnosis. I am on 300mg gabapentin once per day. I also take magnesium, r-lipoic acid and B12. I've been getting acupuncture (7 sessions so far) and it seems to help especially my face tingling. Of course, I am not sure if this is 100% attributable to acupuncture but I will take any improvement I can get. There seems to be very little information out there on progression. If anyone can share their experience, I'd really appreciate it.

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Thanks, do you have a formal diagnosis or is it "idiopathic"? I'm on a lot more gab than you and I don't take mag. because of that.

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Hi
I have idiopathic neuropathy & it is progressive. I am not a diabetic. Is there any way they can find out why I have it? I did have abdominal surgery at the Mayo Clinic in 2018 & it was a difficult surgery so I am wondering if that had anything to do with it or was it the car accident I was in in 2007. I guess I will never know but the gabapentin does not help but when I forget to take a pill, I suffer terribly so you just don't know what to do. I have had this going on 2 years now & i just don't want to end up i a wheel chair.
Thank you for all your feed back. I lean a lot.
God Bless
Genie

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I’ve not really found anything that helps the tingling, numbness type symptoms except good sleep and exercise. Because I have leg problems I can’t walk except for short distances around the house but I can really get my heart rate up with some of the chair exercises on YouTube.

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@johnbishop

@sf2021 I'm pretty sure I would have the same concerns as you do if I had the same symptoms. You mentioned that you've had extensive tests to rule out a few conditions like MS and multiple myeloma. I read in your other post that you have lately felt pressure on the right cheekbone near the ear. Have you discussed the new symptoms with your doctor? Just wondering if it may be providing more information to help with a diagnosis.

What to know about pressure in the head: https://www.medicalnewstoday.com/articles/326531#causes-and-other-symptoms

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I have not yet discussed with the neurologist as this is pretty new. I will do so if I continue to have the symptoms. Strangely, it does not feel like any type of a headache.

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@gator66

Thanks, do you have a formal diagnosis or is it "idiopathic"? I'm on a lot more gab than you and I don't take mag. because of that.

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Idiopathic, I wish I knew what is causing it. I am most concerned about timeline and severity of progression.

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@sf2021

Idiopathic, I wish I knew what is causing it. I am most concerned about timeline and severity of progression.

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me too

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@sf2021

Yes, my tongue and the roof of the tongue tingle which comes and goes throughout the day. My face (left side especially) feels tingling and "off". Lately, I also feel pressure (I can't really describe it as I've never felt this before) on the right cheekbone and near the right ear. I am a newbie to this diagnosis. I am on 300mg gabapentin once per day. I also take magnesium, r-lipoic acid and B12. I've been getting acupuncture (7 sessions so far) and it seems to help especially my face tingling. Of course, I am not sure if this is 100% attributable to acupuncture but I will take any improvement I can get. There seems to be very little information out there on progression. If anyone can share their experience, I'd really appreciate it.

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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.

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@quentin123

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.

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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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