Living With Large-Fiber Neuropathy

Posted by Ray Kemble @ray666, Feb 27, 2024

Hello,

I’m 79. I was diagnosed in 2022 as having idiopathic large-fiber neuropathy (LFN). My symptoms are bad balance, weak-ish legs, and a wobbly gait. Mercifully, I’ve no pain. Understandably, much of the discussion on Connect concerns small-fiber neuropathy, which is more prevalent. I would welcome hearing from others who, like me, have been diagnosed with LFN and are learning to live successfully with it.

Ray (@ray666)

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suetex | @suetex | 3 days ago

In reply to @ray666 "Hi, suetex (@suetex) I have never had a small fiber biopsy. I'm guessing that because when..." + (show)

I ask because I came at it the other way, with negative EMG and then (very) positive small fiber biopsy. No symptoms other then loss of balance. I had Sjogren's Disease (determined by antibodies) and it is known to cause SFN. However, I should have had pain or numbness or something but nada. A second neurologist did a MRI on my Lumbar spine and (I guess) saw the stenosis and diagnosed the Large Fiber. Took several years and several drs. to figure it out. I'm taking IvIg and Retuxan and will most likely the rest of my life. I'm 78 so could be a while. Some progress on the Sjogren's, 'though.

Ray Kemble | @ray666 | 3 days ago

Hi, bb0753 (@bb0753)

No, no PN sensations anywhere other than in my feet, and even there (my feet), I've no reportable numbness (even though two EMGs tell me I have some); the only symptom (or symptoms) I blame on PN is unsteady balance, which is worse at times, not so bad at others.

I am still taking EB-N5 (the medicinal food you refer to). I'm unable to say EB-N5 has "helped;" all I can say is that my PN has not progressed. Is that thanks to EB-N5? I don't know, nor does my neurologist. I'm employing a variation of the adage, "If it ain't broke, don't fix it," reasoning instead, "If it ain't got worse, keep doing what you're doing." 🙂

Ray (@ray666)

bb0753 | @bb0753 | 2 days ago

In reply to @ray666 "Hi, bb0753 (@bb0753) No, no PN sensations anywhere other than in my feet, and even there..." + (show)

Ray, Thanks for your reply. I very much agree, if it has not progressed then I would definitely keep doing what you are doing. I don't feel numbness either. In fact my feet are sensitive to the smallest piece of dirt and I can feel all temperatures etc. My feet are very stiff and skin feels like it is not flexible. I can't stand on one foot or walk toe to toe so balance is definitely off but I can still do daily step aerobics as long as I pay close attention. I do trip some when walking so have to be deliberate to push off well with my feet as I walk. The more I exercise the better I feel. Best wishes to you. Bonnie

allegheny | @allegheny | 2 days ago

In reply to @ray666 "Hi, suetex (@suetex) I have never had a small fiber biopsy. I'm guessing that because when..." + (show)

Hi Ray, you have described the same symptoms that I have! Unsteadiness on standing, instability while walking, I am good once I get started first one to three steps are with much caution.Balance is my chief complaint. I do have some burning and tingling in thighs and feet, mainly at night. A walking stick is a must when in a crowd. Cannot walk on uneven surfaces, grass, beach ( which I live close to, so sad) pebbles, brick patios, etc. I take 300 mg of gabapentin and lots of supplements. R Alpha Li[poic Acid and Benfotiamine, just 2 that I believe has helped. I do exercise 3x a week also a big help. In summer swimming is my passion, I swim everyday when weather permits. I am 81 and being active is key to this evil disease. Keep pushing is the answer!!