Hi,

I have a neuromuscular doctor. I had nerve conduction studies. All four extremities were tested around last year and a different dr the year before. I have posted results in prior posts (a while back).

I changed hospital affiliations. The prior dr to that said I had demylinating….something I cant recall full report that was the year prior to that. She did one leg and an arm. Long story there…anyway…

The newer neuromuscular neurologist said I have chronic, severe poly radiculopathy (nerve damage to lumbar spine and neck) based on those nerve conduction studies. She did not find large fiber neuropathy in legs (only the cubital tunnel).

She said, in order to determine if i have sfn I would need a biopsy.

She said all the symptoms, the burning, tingling, stinging, spasms were caused by this. She put me on an anti inflammatory diet that was purely ridiculous. It was so restrictive and eliminated so much and food groups I did it for a month (for the most part) and could not tolerate another salad.

I saw a physical therapist for over 20+ visits in 2023 who was great and did therapy that was geared to back and for neuromuscular retraining. That terminology request helped me because my balance isn’t great.

The therapist was the one who asked me if I’d heard of CIDP. I did because I researched it after the dx of the symptom of polyradiculopathy. So, we chatted a while and she gave me the name of another NM doctor in my hospital affiliation.

I said I’m not too happy at present with a doctor who has gone half way. Discovered a “symptom” that needs a dx to get proper treatment. She originally was going to do a spinal tap but wanted me to try the anti inflammatory diet.

So, if I don’t get to far with her, if she does not diagnose and treat me, I’m going to go somewhere else. I have a “second” opinion scheduled for early summer (Its the earliest she has).

She had said, epidural and ablation not a good idea for me because it would make balance worse.

The pt said she didn’t think based on seeing me in therapy etc and talking getting to know what I feel and experience that this diet was going to address it.

She stuck her neck out for me by making that recommendation to me.

So, I have enough symptoms someone should be able to figure out something and help.

I just saw my gp/pcp last night. He gave me baclofen to help with the bad spasm in lower calf. The striking nerve pain on bottom of foot is something else. I have to wait for neuro for that.

I’m at my wits end and am in a flare.

Is or can CIDP (poly radiculopathy) be hereditary? Someone in extended family has it an is going for infusion therapy.

I might travel to get dx if I can’t get the right help. These doctors are hard to come by here.