Why do I have all symptoms of neuropathy but Dr can not detect it

Posted by queeniep69 @queeniep69, Jan 19 3:15pm

I had chemotherapy in 2023 after all treatments soon afterwards I have tingling, numbness in toes, feels like frostbite. painful to walk, constant foot cramps and legs cramps, burning sensation in legs and arms. Tingling and numbness in fingers and hands and also cramps. Can hardly write. Saw a neurologist and had EMG tests and results were neuropathy non detection. How is this so I am not making up my pains they are constant . I do not have diabetes. I have scheduled to get a 2nd opinion.

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debbiehirsch | @debbiehirsch | Jan 29 6:54am

Thank you for the information. I hope to find out more information on February when they do a biopsy on my legs. I’m glad that you are finding meds and creams that help you. I wish you well.
Debbie

susiesmith | @susiesmith | Jan 30 1:05pm

I have the same thing~ same numbness, tests done, etc. My neurologist finally said it is small fiber neuropathy, for which there is no cure, only management, and I have almost gone through all management except the immunity injections. It is debilitating to say the least and I struggle with it every day. I understand your pain.
Susie

jeffls | @jeffls | Jan 31 9:38am

Evan in today's modern age all known causes of neuropathy have not been discovered yet. About a third of neuropathies they don't know the cause of, It's usually referred to as idiopathic neuropathy. That being said You should go to a specialty house for the or University such as the Mayo clinic, The Cleveland clinic, Johns Hopkins. These places have much more sophisticated testing to identify neuropathies that you're everyday neurologist would never find. But again even with them there are some neuropathies that they still don't know the cause of.

mcchesney | @kathleen1314 | Feb 1 8:18am

They may not find the neuropathy because of the level of testing. I had what was eventually diagnosed as neuritis from a vaccine. I had extensive testing at Vanderbilt. I was told that Vanderbilt tests at a deeper level than is the norm.

blowerk1216 | @blowerk1216 | Feb 2 12:47pm

Have they tested for methylated B12?

blowerk1216 | @blowerk1216 | Feb 2 12:52pm

I had the same issue so I have done extensive research and now I’m using combination of • Vitamin B12 (methylcobalamin)
. Benfotiamine
• Alpha Lipoic Acid – 600 mg
• Acetyl-L-Carnitine
. Magnesium Glycinate

It’s early days but I’m seeing some improvement!

lolajean | @lolajean | Feb 3 7:23pm

I was diagnosed from a Functional md with non supplemental B6 toxicity which causes similiar symptoms. Including other neurological issues. Found out I did not methylate because of MThFR.
Had no luck with diagnoses from traditional labs.
Insurance didn’t cover the test deeming it unnecessary but it what finally diagnosed me.
Waiting to hear treatment plan.

blowerk1216 | @blowerk1216 | Feb 5 7:48am

In reply to @blowerk1216 "Have they tested for methylated B12?" + (show)

@blowerk1216 not as yet

pennycurious1 | @pennycurious1 | Feb 8 11:34pm

In reply to @debbiehirsch "@pennycurious1 What do you do if you have small fiber neuropathy? I’m being tested for it..." + (show)

@debbiehirsch
That would depend on what is causing the SFN. Some SFNs can be treated. There is special testing i.e. autoimmune testing etc. to ascertain whether SFN is idiopathic or is a result of an underlying condition.