Large Fiber Neuropathy

Posted by inamae @inamae, Jun 12, 2021

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..

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@pacer3702

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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What is gabapentin?

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@robe

I have A similar condition. I got nowhere here in port Charlotte fl. Likewise for the Cleveland clinic in Weston fl. can the may clinic help?

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Welcome @robe, Sorry to hear you haven't been able to find any help. Have you been diagnosed with large fiber neuropathy?

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No no mention was made concerning large or small. Only called axsensor I motor polyneuropathy.

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@robe

No no mention was made concerning large or small. Only called axsensor I motor polyneuropathy.

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@robe, Sadly there is no cure for neuropathy but the symptoms can be addressed with different treatments. You might find the following discussion helpful.

Axonal Sensorimotor Polyneuropathy: Looking for someone to relate: https://connect.mayoclinic.org/discussion/someone-to-relate/

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I have been previously diagnosed with small fiber neuropathy. Now I think I hav what is here described as large fiber neuropathy. My symptoms' onset matches the above description.

What are the best medical centers in the US for this?

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Don't know if this helps but my husband was given the same diagnosis. Do you know the cause? In my husband's case it was heavy drinking. He has stopped and gotten much better. I wish you all the best.

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I have a rare autoimmune disease, Polyarteritis Nodosa. It damaged the nerves in my legs and feet. My neurologist diagnosed me with small fiber neuropathy. Two years later I was diagnosed with large fiber neuropathy.
I don’t tolerate any of the medications for neuropathy so I will use lotions like Aspercreme or magnesium lotion or oil when I need it.

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