Living with Neuropathy - Welcome to the group

I’ve found that Biofreeze helps with the pain. I use it liberally and you can buy a gallon bottle with a pump off Amazon. Not cheap but the cooling relief it provides is better then anything else on the maket.

I have tried everything, I use Ebanel numb 520 it’s lidocaine 5% in a cream you can buy it on amazon or Ebanel direct site,it can be used 6 times a day I found it to be the best

Hi @friendz4, welcome to Connect. Thank you for sharing what helps you. I only have numbness with my small fiber PN. Are you able to share a little more about your diagnosis and symptoms?

Tks for having me!

Hi John, yes after being bounced around for 3 years every test and blood test possible, this is what my nerologist believes I have SFN or CIDP, he wants me to go for plasmapherisis I am not sure I want to do it,

Hi @friendz4 it's good to ask questions. I'm assuming you told your doctor you are not sure about the plamapherisis treatment. What did he say? I was not familiar with the treatment so did a search. I have no medical training or background but reading about it may help you feel a little more comfortable with it.

Plasma exchange treatment of peripheral neuropathy associated with plasma cell dyscrasia.
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/

Plasma Exchange in Neuroimmunological Disorders
-- https://jamanetwork.com/journals/jamaneurology/fullarticle/791917

Plasma Exchange for Peripheral Neuropathy
-- https://nyulangone.org/conditions/peripheral-neuropathy-in-adults/treatments/plasma-exchange-for-peripheral-neuropathy

I read online that 24 million people in the US suffer from neuropathy. Do you think that's accurate?

@pfbacon I've read similar numbers. NIH says it's "more than" 20 million but I don't know where they get the numbers. I've also heard it's more than 80 million world-wide.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

That's a lot. I hope that brilliant researchers get busy inventing better medicine for us. When anything new is invented, we'll hear about here before we hear about it anywhere else, right? (To me, "Better" means something that takes away the pain and numbness but doesn't make us sleepy or fat).

Thanks so much for the information , I let him know I will think about it,he put me on prednisone pack and it’s actually making me much worse,I don’t know what I will do but I will keep you posted,I am very sensitive to meds,so I might have problems with the plasma also,I think some drs drive you crazy that’s where I am at now as I should have had a proper diagnosis a long time ago