Hey, just a short update from me. (31/m/uk)

After 5 years of symptoms I finally completed all of the available tests: MRI (brain and spine), lumbar puncture (and subsequent blood patch... a truly horrible experience for me but feeling better now, and happy i did it), and then a multitude of blood tests for everything going. All of them came back negative/ all clear. I also did a 2 months of a strict elimination diet, and although i didnt find any triggers there, it was probably the most useful to me to rule out everything food related.

This ultimately leads me back to the unsurprising conclusion of idiopathic neuropathy, most probably small fiber. I did ask about a nerve biopsy but they said that can do more harm than good.

The diet really closed a lot of questions up for me and now i just keep a minimum symptom diary and try to forget about the symptoms as much as possible. Paying too much attention and stressing about this stuff just created more worry, and that definitely didnt help me.

So now i feel happy to accept the 'diagnosis' - (im so bored of being tested! ) and im not in bad shape really, i still have the same issues of burning fingertips/ hands when touching objects, and also some prickling issues in my left foot/ leg but it doesnt seem to be progressing too fast, so thats good.

In conclusion, after 5 years im basically still in the same place but thats okay, 5 years ago i think i wouldve taken that

Cheers,

Jim