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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 and nobody seems to have a reasonable explanation for my nerve pain, and because of the normal neurophysiological tests 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. Google says peripheral neuropathy, but the doctors say no peripheral neuropathy or small fiber neuropathy.
The nerves affected by symptoms are: posterior tibial nerves in both feet, pudendal nerve on left side and infratrochlear nerve (?) on right side of the face.
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.
The only medication that seems to work a little is Oxycontin and nerve block with local anesthesia.
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 this makes me really panicky and suicidal at times.
Any suggestions? Should it really be this hard to get a diagnosis?
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