Mine started in mid 2019. It was what I call pins and needles in my heels. I thought it was from sitting too much. I do A LOT of driving. I like to have my legs up while watching TV. I had to let my heels over hang the foot stool due to the pins and needles. Then in Nov of 2019 I felt an odd tugging or pulling sensation in my lower left abdomen. At a yearly physical my MD did not think it was anything. Then in March 2020 I had a funny buzzing deep in my groin..it lasted a few days. Then almost suddenly in April 2020 I had weird sensations down both calves...sort of burning, pins and needles, maybe even a dullness to my skin that is hard to describe. That same month I had weird sensation all over...sudden shock feelings in my palms, sudden numbness in different areas around my lips, burning in my calves. My MD had no idea but wrote "neuropathy" in his notes and referred me to a local neurologist. I was FREAKING out. I had turned 56 that year and had always been healthy. I was overthinking and thought MS. The neurologist did a simple exam checking my gait, balance, pin prick sensitivities. Then he said SMALL FIBER NEUROPATHY. Believe it or not I was relieved. I had convinced myself it was MS. He said "it's symmetrical, MS is not symmetrical." Of course, later it began to sink in that I had SFN. He did not do advanced tests, so I looked for a specialist. In Jan 2021, I went to a neuropathy clinic in Rochester NY. Had lots of blood work, had punch biopsies, had nerve conduction...and get this...the specialist found nothing. The biopsies showed axonal swelling. That was all they had. He wrote that it looked like SFN but the tests were not able to confirm, and a cause had not been found..

Now it's Oct 2021. I have head to toe paresthesias. I have weird mottled skin on my arms. I get sudden sensations of all kinds from head to toe: buzzing, itching, sudden burning, sudden skin changes. I have developed a patch of numbness on my right great toe.

I had one follow up. I told them about the worsening skin changes like hives and wheals that suddenly erupt on my skin. They suggested an allergist or immunologist.

It continues to drive me crazy. I believe that it is worsening...I don't know when or if it will plateau. My wife wants me to stop focusing on it and try to live.

I have another follow up in 2 weeks. I get emotionally worse leading up to follow ups. I find myself concentrating on it more.

Sorry...no advice. I feel depressed with the idea that I have something current medical science can't help with. My wife tells me to think about those with so much worse than me. I sleep well most of the time. Skin seem chronically sensitive not, but it is not really painful except for fleeting burning sensations. I have no motor impairments.

But I do have IT. And I don't know what it is and where it is going.