@topeanut
This will be the 4th time I’ve started this reply. I keep getting interrupted and lose everything.
My nerve conduction test showed severe nerve damage. The nursing home I live in made me do physical therapy but that wasn’t the answer at that stage. I had to fight with them for months to see a neurologist.
Please note I don’t have pain unless someone touches my legs; then I go through the roof.
My discomfort shows in my legs which are tingly, like electric shocks going up and down. And leg swelling.
Finally had the spinal tap in 2022. That determined my CIDP-Chronic Inflammatory Demylinating Polyneuropathy. The demylinating part involves the myelin coating on the nerves has been stripped away leaving them raw, thus the tenderness in my legs.
The nerve damage in my hands makes it difficult to pick up things, to hold on to anything (stuff just slips through my fingers), and dropping things.
But my balance is very bad and I can’t walk without a walker, someone following me with my wheelchair, and a belt around my waist to grab me in case I start to fall.
So my time is spent either in the wheelchair or in bed. And, of course, I tire very easily.
I get experimental Iv treatments (4yrs now) but I seem to have hit a plateau where I’m no longer improving.
My neurologist doesn’t want to give me any of the advertised meds. He’s afraid they might compromise my immunity with disastrous results.
I don’t know if I’ve answered all your questions but I hesitate to move this reply to check what you wrote because I think that’s one way I’ve lost previous answers.
So ask again if you need to.
I wish I could give you solutions but I can’t get them either.
Good luck and bless you.