Large Fiber Neuropathy

Posted by inamae @inamae, Jun 12 12:03am

I was diagnosed with motor-sensory axonal peripheral neuropathy by NCV a few weeks ago. My neurologist was no help in answering my questions, but as I google it appears this is the type that causes muscles to atrophy (already see this happening to me, as well as severe pain, tingling, burning, etc) plus the inability to walk, use hands, etc. Please, can anyone help me out with any information. I am terrified as to how soon it will happen. Thanks..

Hello @inamae, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear your neurologist was not much help answering your questions. There is another discussion you may want to read through where members are discussing Small Fiber Neuropathy turning in to Large Fiber Neuropathy: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-turning-in-to-large-fiber-neuropathy/

When I was first diagnosed with idiopathic small fiber peripheral neuropathy I too was searching for a lot of information just trying to understand long term effects and all the little questions that were popping up in my head. I don't have pain with my neuropathy but just the numbness and some tingling. I found some really good YouTube videos by Matthew B. Jensen, Assistant Professor of Neurology, University of Wisconsin. Here is the link to his YouTube channel – https://www.youtube.com/c/matthewbjensen. What I really like about them is that he explains the conditions and how they are diagnosed in layman's terms.

Another great source of information if you have not already seen it is Neuropathy Commons – https://neuropathycommons.org/. I also use Google Scholar to locate some of the latest medical information and research on topics – https://scholar.google.com/. What I like about Google Scholar search is that you can sort the results by years and find articles since 2021, etc…

Hopefully other members may be able to answer some of your questions with their experiences. Are you able to share some of your questions you are looking to get answered?

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Yes, I would like to share some questions I am looking for answers.

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I'm glad to see large fiber neuropathy brought up (at last!) I was diagnosed 18 months ago. Please post your questions. Neuropathy isn't a simple diagnosis, so you're smart to do as much research as possible. You will also have much better questions for your caregivers if you have a clear goals. There is a lot you (and those caregivers) can do to keep disability from messing up your life. Are you already having difficulty walking, or is this something you're worried about happening? I'm including a picture of me, my walker, and my "bred for low activity" dog.

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So loved your sharing and your adorable pooch (asthma and can’t have one😪).

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My neuropathy started in November last year and continues to get worse. I had my first visit with a neurologist in March. Because I have two autoimmune diseases (and a liver transplant last August), he suggested I might have a third autoimmune disease which is causing the neuropathy.

I tested positive for Sjogren’s Syndrome, along with a couple other, yet to be determined, things. Yesterday, I had my second visit with my neurologist, and asked more specifics about my symptoms and possible treatment. He said I have Large Fiber Neuropathy…so, like you I’m starting to research it. He is also sending me to Dartmouth to see a neuromuscular doctor. And, tomorrow I have a second visit with a rheumatologist.

Did your neurologist tell you a possible cause of your neuropathy? Order any more labs? I live in a small town, but I’m fortunate I can drive to Dartmouth in under two hours for more specialists and treatment options. If you can, I would urge you to insist on a referral, more labs, or at least better advice from your neurologist!

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@athenalee

My neuropathy started in November last year and continues to get worse. I had my first visit with a neurologist in March. Because I have two autoimmune diseases (and a liver transplant last August), he suggested I might have a third autoimmune disease which is causing the neuropathy.

I tested positive for Sjogren’s Syndrome, along with a couple other, yet to be determined, things. Yesterday, I had my second visit with my neurologist, and asked more specifics about my symptoms and possible treatment. He said I have Large Fiber Neuropathy…so, like you I’m starting to research it. He is also sending me to Dartmouth to see a neuromuscular doctor. And, tomorrow I have a second visit with a rheumatologist.

Did your neurologist tell you a possible cause of your neuropathy? Order any more labs? I live in a small town, but I’m fortunate I can drive to Dartmouth in under two hours for more specialists and treatment options. If you can, I would urge you to insist on a referral, more labs, or at least better advice from your neurologist!

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My scenario is similar except I only have recent onset of large fiber peripheral neuropathy due to Sjogren's disease. I would appreciate any advice regarding medications, management. My neuropathy symptoms are greatly aggravated by sitting. Have you experienced that?

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@pacer3702

My scenario is similar except I only have recent onset of large fiber peripheral neuropathy due to Sjogren's disease. I would appreciate any advice regarding medications, management. My neuropathy symptoms are greatly aggravated by sitting. Have you experienced that?

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That’s about when mine started and also continues to get worse. I gave up on Dartmouth rheumatology, but just got referred to a rheumatologist I had reached out to via email. I also saw a neuromuscular neurologist last week who believes I may have spinal nerve damage caused by both my autoimmune diseases, plus liver disease, which was previously caused by one of the autoimmune diseases, and one of the immunosuppressive meds I’m on (I had a liver transplant a year ago). I’m to have a MRI at the end of the month.

Currently I’m only on 400 mgs Gabapentin, which does help the sharp leg pain, but does nothing for my feet or back pain, numbness, tingling, etc. I don’t eat sugar, white flour, processed foods, and I walk a couple of miles each day and exercise. I am taking supplements which, with the diet and walking, seem to be helping some. Right now I just need something for back pain which so far has not been prescribed. I see my neurologist again next week so I’m going to ask him.

For me the worse symptoms are in the late afternoon and night. My back is slightly relieved by lying down, although my feet get worse. I’ve developed of late terrible itching and mild burning in my back.

Sjogren’s is not understood well by rheumatologists, so it’s quite frustrating. Are you seeing a rheumatologist? Neurologist? Are you taking anything?

Have you been to Sjogren’s Advocate…I’ve found it the best resource. I hope you can find some treatment that helps. Let me know how you’re doing.

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@athenalee

That’s about when mine started and also continues to get worse. I gave up on Dartmouth rheumatology, but just got referred to a rheumatologist I had reached out to via email. I also saw a neuromuscular neurologist last week who believes I may have spinal nerve damage caused by both my autoimmune diseases, plus liver disease, which was previously caused by one of the autoimmune diseases, and one of the immunosuppressive meds I’m on (I had a liver transplant a year ago). I’m to have a MRI at the end of the month.

Currently I’m only on 400 mgs Gabapentin, which does help the sharp leg pain, but does nothing for my feet or back pain, numbness, tingling, etc. I don’t eat sugar, white flour, processed foods, and I walk a couple of miles each day and exercise. I am taking supplements which, with the diet and walking, seem to be helping some. Right now I just need something for back pain which so far has not been prescribed. I see my neurologist again next week so I’m going to ask him.

For me the worse symptoms are in the late afternoon and night. My back is slightly relieved by lying down, although my feet get worse. I’ve developed of late terrible itching and mild burning in my back.

Sjogren’s is not understood well by rheumatologists, so it’s quite frustrating. Are you seeing a rheumatologist? Neurologist? Are you taking anything?

Have you been to Sjogren’s Advocate…I’ve found it the best resource. I hope you can find some treatment that helps. Let me know how you’re doing.

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Thank you very much for this information. When I visited Sjogren's Advocate, I learned I probably don't have Sjogren's after all because my blood test was only positive for the B antibody. Thank you for helping me discover this important information! My large fiber peripheral neuropathy is considerably worsened by sitting. The latest theory is that an inflamed piriformis muscle is pressing on my sciatic nerve. I'm hoping that is the case, because it would be fixable. For the nerve pain in my feet and calves, amitriptyline works better for me than gabapentin. I admire your courage in dealing with multiple medical conditions. I hope the neuromuscular specialist can help!

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That’s good news! I hope the new theory is proven correct!

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