Undiagnosed neuropathic pain

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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?

Regards, Jake

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6 Replies

  • Posted

    Hi Jake

    Sorry to hear about your neuropathic pain my sympathies are with you.  Have you had a skin biopsy done? I had one done in my calf and it showed I had small fibre neuropathy emg testing only shows large fibre neuropathy. I had a great neurologist who really listened did a barrage of tests and diagnosed me with a sensory ganglionopathy. If I was you I would get a neurologist that is willing to get a skin biopsy done it’s not every hospital here in UK that does it I had to go to London to get mine done and I live in Scotland. 

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  • Posted

    Hi Jake!

    I agree with the previous comment. This kind of neuropathy can only be verified by skin-punch biopsy (which they don't do in all countries - but Europe should be okay). You'll need to specially request it. My tests are also all fine, but I know for a fact that I have small fibre neuropathy, which feels exactly like what you're describing. I'm only 28, by the way, and until recently had been a runner and horserider. No explanation after 6 months.

    May I ask of you've looked into gut/diet related issues? Gluten intolerance, as well as autoimmune diseases like Celiac and Chron's, famously create neurological problems - even in the complete absence of digestive symptoms! Try cutting out gluten (be strict - check every canned food, spice, stock, etc.). Try cutting out sugar too, and if you're brave enough, dairy as well. Those all aggravate nerves and the immune system. Also go for a gastroscopy and colonoscopy. I'm doing those next week. smile

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  • Posted

    Ignore what Dr Google tells you and ask for a skin biopsy.    Your doctor will give you a diagnosis in the end.  Your symptoms do sound like neuropathy of some type.. My neuropathy was diagnosed based on my symptoms alone.
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  • Posted

    Hi jake I woke up in Dec 16 to tingling in both feet within hours spread to my knees then into both hands it's stayed there since none stop tingling I've not had a second without it since it began ,I've had every test bloods mri of my brain several nerve tests and an emg all fine just had a cervical spine mri I'm waiting on results for, I believe it's small fibre neuropathy I'm told if it is its idiopathic and there's no treatment for it I'm at my wits end I also have muscle twitching in my legs and arms I don't know what else to do as nobody seems to care what this is

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  • Posted

    It seems similar to what I have, in 2015 I took harvoni for hepatitis c and shortly after that I started having a funny feeling start in my feet. I went to my pcp and he referred me to the vascular disease doctor to see if I had peripheral artery disease but that turned out negative. Then I had an appointment for a emg test at neurology. They said I have polyneuropathy and left it at that. I didn't like the neurologist so I got a different one. And this one only gave me gabapentin for the chronic pain which does nothing at all for pain. I have been on lyrica, cymbalta and celexa which made things much worse. I am weaning myself off of gabapentin because I have heard horror stories about that drug and I am going to try to get something different that will help with pain. My pain is always worse starting in the afternoon but worse at night. You would think that a neurologist would be able to figure out because that is one of his specialties but he said that nerve pain is hard to figure out and he was doing his best, which I don't really think so. Good luck with it

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  • Posted

    Hi Jake 1974

    I  suffer with sensory neuropathy and have the same symptoms but not in the face.

    I am on fire 21/7 and am on treatment.

    when you feel like you are in a panic , just stay close to your partner.it helps a bit with someone who understands.

    just hang in there.

    let us know how it has been with you

    Kind Regards



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