Sounds somewhat familiar. January 2017 diagnosed with small fiber neuropathy. July 2017 I drove from Massachusetts to Missouri, but in December I had to give up driving because I had no feeling in my feet or legs. February 2018, further EMG testing revealed both small fiber and large fiber. Pain, burning, numbness, etc from waist down to soles of my feet, both legs, and getting worse.Neurologist in St. Louis called it idiopathic, which I think of as "Doc, you're an idiot for not listening to me and exploring possible connection to my life-long thyroid issues, changes in my spine, and a history of several genetic glitches. I'm heading back to Mayo in August.

I am scheduled to start IVIG in two weeks. I, too, would appreciate any information shared. Thank you.

my son has been getting ivig for 18 years...it will help

drive with hands...very easy

I have been diagnosed with a skin biopsy with small fiber peripheral neuropathy and read everything I can find about it. What is IVIG? I have tried Lyrica, gabapentin, nortriptyline, and others with nothing but severe side effects.

Hi @cmartinjr, I believe there are others here who can share their personal experience with an IVIG. Here is some information I found that gives a little background information on IVIG.

Patient education: Intravenous immune globulin (IVIG) (Beyond the Basics)
-- https://www.uptodate.com/contents/intravenous-immune-globulin-ivig-beyond-the-basics

John

Thanks!

My PN is also idiopathic. In three years it has spread from the bottom of my feet to both legs and hands.

My idiopathic PN (although I think docs didn't explore some possible options) began in my feet in June 2016, and since then has gone up both legs pretty much up to my waist. Not as much in my hands. Heading back to Mayo in August where I hope I can get docs to work with me on possible treatable causes.

Hello @giarc60 -- welcome to Connect. My idiopathic small fiber PN is in my feet and legs to just above the ankles but I have no pain with my PN. I just have the tingling and numbness with the PN. Do you have pain with your PN? Are you on any medications if you have pain?

I've had my idiopathic SFPN for 20+ years but did not get it diagnosed until mid 2016. The numbness was in both legs from the toes to just below the knees. I started taking a protocol of supplements in Sept 2016 and by December the numbness was down to just above the ankles but sadly has remained about the same since then even though I continue to take the supplements. My feeling is that they are still working as the PN is not progressing as my neurologist said it would continue to do when I was diagnosed. There are a lot of scams out there for the magic cure so you really need to do your own research. Here's a link to where I posted my story if you want to know more:

-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

John