Hi there all.

I'm kind of wondering if this is the right place for me. Be kind and read my story, and help me understand what is going on with my body.
I'm a 37 years old man.

I was previous extremely active. Lifting wheighs x5 weekly and jogging / hiking mountains 2-3 times a week. It has been this way for about 15 years.

In the fall of 2011 I started noticing painlless discomfort in both my hips, but I thought it was just my body adjusting to me recently having increased my leg training.
In february 2012 i pulled my hip during fast walking. But the injury didn't seem to heal. Instead the pain increased and went to the groin and then up to my other groin a month later. I got nasty pain in the skin and the muscles. I could barely sleep, and my hips had to avoid certain positions. Even so I tried to stay a little active. After a biking trip a couple of months later I suddenly started to rachete when I went down the stairs, the fasciculations and shaking all over started. And I started to pull muscles real easy.

It became wery bad after a while. Rubber legs (still has them), twitching, globus sensation, hip pain, hyperesthesia, neck pain, headaches, RACHETING (freaks me out), joint pain, muscle aches, fatigue in my legs, leg cramp, heavy shoulders, tinitus, light headed and a racing heart to name some. I could only stand up for a few minutes due to my hip pain, and I could only walk a couple of hundred meters.

I've never been a anxious person, but I think I've had sort of a jumpy nervous system due to me easily getting the cills and beeing sort of jumpy I guess.
Prior to this happening I've been experiensing hyperesthesia on several occations and places for several years, but I never thought about it until now. They just went away after a couple of days and there could be months between them, I thought I'd just stressed som nerves during training. I've also experienced some fasciculations, but nothing that did not stop after some hours.

I' been to 2 neurologists and 3 doctors. I've done all the testing. MRI, spinal tap x2, EMG, neurography and all the blood testing. Nothing.
I've also tested for lyme at a alternative clinic and the results were inconclusive. But I tested positive for mycoplasma pneumoniae IgG and IgA.

I lived mosly lying/sitting for almost 6 months. But then the hip pain sloooowly decreased, and I could walk around a bit more.


As for now I'm feeling a lot better, but far from ok. I twitch in my calves 24-7. But the symptoms that gets to me is the hip pain/discomfort and hip fatigue. They keep me from being active. I also have muscle aches in my hips, but the burning in my groin has disappeared. My butt feels sort of numb and so does the outer part of my thigh/hip. If I squat 15 times my hip flexors and adductors start to cramp up and I have to ease out of the flexed position. No weakness. I also have a CONSTANT burning tender feeling in the skin of my hips. This has lasted almost 2.5 years and is showing no signs of going away. I still have the racheting, but to a far lesser extent.

About 12 months ago I suddenly felt that my two outer 3 toes on right foot started to feel odd. No numbness, just different. Sadly this is still present, and soon after the same feeling appeared in both my heels a day after walking a while. This is also still present while standing up on my feet no matter which shoes I try. They feel tender. At this point I started to suspect SFN, but my neurologist has told me to forget about it because I have no signs of it. All my tests are clean. He had never seen a pure SFN and won’t give me a skin biopsy.
I also have sudden appeareces of hyperalgesia on random places of my body which can disappear after a day or two.

Obviously I've been through all the scares of MS and ALS, but I do not fear them no more. But I’m scared of neuropathy which will give me pain and disability the rest of my life.

I were positive about the improvements in my condition for a long time, but since the odd sensations in my toes/heels appeared I’ve been really depressed and anxious. Recently I’ve become more allergic to foods, and sores appear on my tounge constantly so my mouth is more or less always in discomfort.... Sometimes I also feel like I,m not getting enough air whilebreathing.


Have anybody else had signs before the disease that something was wrong? I had the occational hyperesthesia for at least 5 years prior. And I've had a stabbing pain in my right rib for just as long which could wake me up screaming. I just thought it was kidney stones or something. I also had fasciculations and buzzing on occations, but more than normal people? It was normal for me.

Now I feel like I’m at the end of the road. The neurologists say :wait and see. My primary doctor has little to offer me exept ordering new blood tests. My blood tests are fine by the way. (little low on vit D, but went up with supplements.) I feel like I can’t afford to wait and see. I feel like nerve damage is happening as I wait. Nobody has any suggestions of what to do/or what is wrong with me.

Could this be SFN? I’ve also thought about some sort of hyperexitable nerve syndrome as a cause.

Best Regards
Scandinavianmale