It’s almost unbelievable that all these docs can’t seem to help us. You can bet that if our name was “Brady” or “Judge”, we would have an exact diagnosis and treatment plan within weeks, even days.

I get it! I don't think I can even guess how many medications, therapies, pain specialists, etc. I've been through for more than ten years. I was going to try LDN last year but Levofloxacin destroyed the tissue in both of my Achilles tendons and ruptured them. I put the LDN on hold until after I get tendon transfers - the right one was done last month and the left one will get done when I can walk on my right leg again. Then when that heals I'm having a right knee replacement, and on it goes!

Has a doctor ever prescribed Hizentra sub Q? Or if insurance denies it, maybe Gamunex? I'm starting weekly sub Q infusions next week. Hizentra was a miracle! But insurance wants me to try Gamunex first. I'm angry that they wouldn't just approve what undeniably gave me pain relief!

What are your symptoms? I have CIDP with burning pain in my feet and ankles, along with areas of sensation loss, tingling up to my knees. Because of the Achilles tendon ruptures I'm wearing a brace still on my left leg and a cast on my right. You can imagine the effect it's having on my neuropathy.

My granddaughter who's going into the 6th grade plans to be a research scientist. I told her that she would make friends all over the world if she found a cure for pn. But I don't expect that to happen in my lifetime.

Hang in there.

Jim