NeuroTalk Support Groups - Undiagnosed neuropathic pain

Hello.

I am 44 years old, male from Sweden. Otherwise healthy.

Since October 2015 I've had nerve pain, most severe in my feet, but also in my face and lower back.

I've had 4 neurological investigations (with EMG, nerve conduction studies and thermal thresholds), seen 7 neurologists and 30+ other doctors, and been on a multidisciplinary pain assesment.

All tests have come out fairly normal (except from some deviations on thermal thresholds) and nobody seems to have a reasonable explanation for my nerve pain, and a diagnosis of peripheral neuropathy has been ruled out.

Nevertheless, the pain clinic decided to refer me to an ortopedic surgeon for evaluating tarsal tunnel syndrome.

In February 2018 I had surgery for tarsal tunnel syndrome in my right foot (worst). According to the surgeon the tibial nerve had signs of compression and there were varicose veins in the tarsal tunnel.

Unfortunately the surgery didn't help at all. And these findings don't explain all of my symptoms anyway. So I guess there's something else going on.

The nerves affected by symptoms are: posterior tibial nerves in both feet, pudendal nerve (rectal area) on left side and like a "sun-burn" tingling in the skin on right side of my nose.

The pain is characterized as: tingling, prickling, cutting, stabbing, burning, crawling and some numbness.

There are also a lot of random muscle twitching at various locations in the body. Tinel's test is strongly positive when tapping on feet and lower spine.

Pain treatments I have tried (without significant effect): Gabapentin , Lyrica, Amitryptilin, Botox injections, Oxycontin, nerve blocks and cbd-oil.

The symptoms are always worse in the evenings. And slowly getting worse overall.

It's a total inferno of unpleasant sensations in my feet 24-7, and it has caused devastating effects on my life.

Any suggestions? How can I get a proper diagnosis?

Regards, Jake