Living With Large-Fiber Neuropathy

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.

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)

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

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!!

I'm trying the Topo Ultrafly5, which is their stability shoe. The shape is great. I got the wide and by my measurement the toe area is 4.5" across (Hoka wide is 4", which my little toe poked a hole through.) I measured as an 8.5 and they recommended going up and wide, so I got the 9 wide. I am trying to decide if I need the 9.5, but I don't want the foot to be moving forward in the shoe. I am MUCH MORE comfortable and stable in these, than either the Hoka Bondi 8 or the Orthofeet, which has an odd rectangular shape. The Ultrafly has 30mm height in the heel and 25 in the forefoot, so it is a 5mm drop. Have to do calf stretches while adapting to a lower drop. So it is a low drop, not a 0 drop. High drop hurts my bunions. The Hoka is a 4 to 6 drop, but the height of cushion under the foot is high, so I felt unbalanced sometimes. I would like to wear just the shoe, without adding orthotics, and so far, the roll bar seems to keep the over pronation in check. If I need to add the orthotics, I will probably need a larger size. They let you wear them outside and can return within 30 days (topoathletic.com only--be careful, there are knockoff sites with similar names). Very comfortable. Decent arch support. Wide toe box, but not high. The fabric stretches, though, so even though I thought I would miss the high toe box, my feet don't. And the shoe fits the mid-foot and heel, which many wide shoes do not. My toes are getting used to walking without being cramped. I wear Birkenstock sandals so my toes are fine in those, and the drop is lower. But all my athletic shoes cramped the toes. The right foot is deciding if even this toe box is wide enough for longer walks in warmer temperatures (Florida). I am also experimenting with different sock thicknesses. I'll update again. I am walking a mile most days in them (slow pace, about 30 minutes, between foot and back arthritis).

Hin Marieltha, I too depend on a good stability shoe, my balance is very challenging, to say the least. I read your comments and I have never heard of Topoathletics, I went on their website and after reading about their shoes along with reviews, I decided to try the Aura Toro. I have been wearing Hoka Bondi 8 with PowerStep insoles for overpronation and arch support. I am excited to move on and try another shoe for better balance and stability. I know my brain is not getting signal to be secure on uneven surfaces, one Dr. explained my feet are always in outter space! Thought that was a fabulous explanaition for me. I will try to keep you posted on if they will work for me. Best wishes in finding the BEST shoe that works for you...Thank You