Diagnosed with moderate/severe poly neuropathy: sensory motor

Idiopathic sensory and motor neuropathy. 52 YO male. Diagnosed w/sensory motor idiopathic neuropathy (N) at 51. Not diabetic. No known risks factors for N. 175lbs. Exercise regularly. Retrospectively, noticed onset of unusually sore feet & fleeting moments of tingling in feet about 3 yrs ago or so. Late 2021-early 2022, noticed onset of foot cramps on & off. April-May 2022, leg fasciculations emerged bilaterally in lower legs mainly. They continue. June or 2022, sensory symptoms (tingling, burning, vibrations, buzzing, waxing waning numbness) in feet & hands. Cramps in feet more than hands increased. Diagnosed by neurologist in July - August after clinical exams, extensive blood work (30 vials of blood over 3 settings), brain & spine MRIs, and EMG. Doc says he’s confident I do not have ALS & this is not a precursor to it. Hope he’s right! I have No UMN symptoms. Currently able to drive, work, walk, and live a decent quality of life with 600 mg Gabapentin. Pain & cramping always near but mostly managed for now. No significant weakness assuming I don’t linger on my feet/legs too long at once. No consistent numbness. No balance difficultly. Actually feel stronger waking than standing. Cramping and pain certainly worse on days I work versus days I’m off & can rest more. Praying I can make it to retirement age (57 for me) before becoming too disabled. Doc is confident I will do so. On this site, I see there are many forms of N. While all comments are welcome, I’m particularly interested in hearing from folks with N similar to mine, your story, effective management strategies, etc.
Like many on here, I lean on my faith & prayer along with GABA & family to cope currently. Prayers for all suffering with illness!

Hello @mernky and welcome to Mayo Clinic Connect. It seems as though you are managing your diagnosis quite well still four years in. Glad to have you join so that you can trade information with other members like @njed @pamelaz @govisri and @duquer.

What types of management strategies have you explored so far?

Thank you! I was just diagnosed last year. Just prayer, exercise & Gabapentin so far. GABA helps a lot with sensory issues/pain. Twitching, mild weakness, cramping in feet and lower legs more than hands & arms, certainly disrupt my life! Remembering to appreciate the here and now and leaving the rest to my Lord & Savior brings me peace & hope on good and bad days!

I haven’t found anything that works.

@pamelaz - I have not found anything that works for axonal sensory motor PN either. I found out by a neurologist at Mayo that Lyrica and Gabapentin actually can make things worse by an increase in gait instability. Oddly enough, I was prescribed Gaba but could not tolerate it. At first, I felt a decrease in numbness in feet. The negative side effect outweighed the small benefit so on the advice of Mayo, I stopped. Otherwise, like you, not much helps and I've taken many supplements with prior doc approval as suggested by mentor @johnbishop. Still, not much improvement. I feel supplements will help in many cases depending on the cause of the PN.

I haven’t found anything that works.

I just saw a new article on a promising study using spinal stimulation for DM neuropathy. Can’t copy here. Article is encouraging, assuming results are promising for idiopathic N too. You can find it on the web I’m sure.

Hi @mernky, do you have the title of the article or any other identifying information (author, journal, research institution, etc)? Or maybe a link?

It would make it easier to find.

Thank you

Here’s a pic of the title

@larry4343, @mernky, Here's the link to the article:
--- Spinal Cord Stimulation May Help Diabetic Neuropathy:
https://neurosciencenews.com/spinal-cord-stimulation-diabetic-neuropathy-22678/