1. < Neuropathy

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 21, 2021
In reply to @dijak "Kathleen123. Have you found anything at all that helps the limb nerve and tingling. I was..." + (show)
@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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1 reply
sf2021 | @sf2021 | Mar 21, 2021
In reply to @kathleen123 "I was diagnosed in 2010. The progress was relatively slow at first. Even now my face,..." + (show)
@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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sf2021 | @sf2021 | Mar 21, 2021
In reply to @johnbishop "Hi @sf2021, Welcome to Connect. I posted a few scholarly articles on non-length dependent SFN earlier..." + (show)
@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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1 reply
sf2021 | @sf2021 | Mar 21, 2021
In reply to @gator66 "Ah, finally I see that someone else has symptoms on the face and tongue. Me too...." + (show)
@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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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 22, 2021
In reply to @sf2021 "Hi, John. First I want to thank you for being so diligent and responsive on the..." + (show)
@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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1 reply
gator66 | @gator66 | Mar 22, 2021
In reply to @sf2021 "Yes, my tongue and the roof of the tongue tingle which comes and goes throughout the..." + (show)
@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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1 reply
tigreyes2004 | @tigreyes2004 | Mar 22, 2021

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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kathleen123 | @kathleen123 | Mar 22, 2021

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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sf2021 | @sf2021 | Mar 22, 2021
In reply to @johnbishop "@sf2021 I'm pretty sure I would have the same concerns as you do if I had..." + (show)
@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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sf2021 | @sf2021 | Mar 22, 2021
In reply to @gator66 "Thanks, do you have a formal diagnosis or is it "idiopathic"? I'm on a lot more..." + (show)
@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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