Cannot find the cause of neuropathy after multiple tests

@grrranny
I felt very twitchy and jittery all over. It was weird and so uncomfortable, I never took it again. Very restless. It works for some, but not for me. I just started R-ALA. (R-alpha lipoic acid supplement). I'm praying it'll help with the burning🙏
Nancy

Could be he is not absorbing B12. It makes our nerves insulation . Myelin.
, without which much pain. Alcohol stops absorbtion of B12. Could be an overall poor diet i.e. iplenty of carbs but no animal protein . Best B12 sources are liver and mussels. Try chicken liver pattie.

@lindamaegirl 50% neuropathy is diagnosed as idiopathic after all possible causes and testing are negative. If a cause can’t be proven it is called idiopathic. Usually the end result or ensuing treatment(s) is the same regardless of cause.

@jamessaxo B12 deficiency is possible, I would imagine a dr. would have tested for it, also, too much vit. B6 and gluten can cause neuropathy.

@lindamaegirl same here since 2023. All tests negative still unbearable pain in feet,shins and calves. Now extending to the knees too. PCP calls it idiopathic neuropathy and keeps prescribing Pregabalin which doesn’t help one bit…very very frustrating…

Has he been prescribed Pregabalin or Nortriptaline ? A combination of the two worked for me sometimes. But due to side effects I try to avoid. If he is in so much pain I think he should give that a try at low dosages

suepooh53114- Since 2021 I have suffered from chronically painful, potentially loosing the ability to walk lumbar issues, almost unheard prostate enlargement size and all the awful results of that syndrome, cancer, and the surgical removal of a long term implanted morphine pump and the associated withdrawal. Those issues have caused me to endure two major lumbar operations, a 4 hour prostate enucleation surgery, a complete thyroidectomy and associated radiation, plus the pump removal surgery. This has all provided me much experience in navigating the medical maze. I have been fortunate enough to afford a complete and comprehensive medical insurance which has opened many medical "doors" for experts and procedures denied others. Although not admitted, hospitals do give priority to those who can pay and that reputation has a positive impact on timing, lessening frustration and creating other efficiencies. Unfortunately you have a lapse in your medical insurance which can hinder that advantage. Also you need a diagnosis from your primary to start the process. Hopefully you will eventually get the right "team" which is vital to any success,. I was very fortunate to achieve that initially-many have had to "wade" through to find the experts that work for them which can take some time. It is an imperfect system and "bumps in the road" always occur. I am now on the other side of that road, with the diagnosis and surgeries and treatments on going or behind me for those problems (I am sure new ones will come up-just give me another test). I don't want this to sound cavalier- I do realize the confusion and difficulties and have some of those even now for some remedies have been successful and for some others I am still waiting. I do wish you well.

I too have neuropathy. Restless legs are a small problem but loss of balance has made me very dependent. I walk slowly with a stick in hand but get tired/short of breath very quickly. I experience electric shocks in my legs and feet. I take Vitamins Bs first thing in the morning, which gives me some relief. Loss of balance has deprived me of independance. If only I could use public transport, I will be visiting friends, places and events, a free man riding buses and trains all day (I have a freedom Pass).

@lindamaegirl I agree there appears to be little research that is looking into the root cause of neuropathy.

Helena. I take 100 micrograms B12 daily.