NeuroTalk Support Groups - No diagnosis

Hello everyone! This is my first post at this forum. I find myself in a situation which I have yet to accept (if I ever will) and one of them is the fact that I have no clue what is going on with my body.

All of this started on February 2017 with me noticing a light tingling in my feet at the end of the day as I came to rest infront of the TV. That tingling spread from being being isolated to the feet and in the evening to including my whole body as well as affecting me 24/7 over a period of 3 weeks. Initially it was just annoying and a little bit scary, not knowing what was going on. Overtime however it started increasing in intensity, making it uncomfortable to remain seated, standing or laying down. However, as soon as I moved, these symptoms would go away.
In mid march it started to affect my sleeping and I went from 6 hours, to 4 hours, 2 hours and finally almost no sleep at all.

Initially it was suspected that what is was suffering from was a full-body version of restless legs (aka WED - Willis Ekbom Disease) as my mom also has it and that there might be a genetic component. For this I was given dopamine antagonists (Sifrol) which helped to lessen the symptoms with the side effect of giving me insomnia. I got a referral to a sleep specialst as well as a neurologist. However, since I am in Sweden and I don't have a private insurance, I would have to wait at least 3 months and already at that time the lack of sleep and never being able to rest in any way was driving me crazy. I managed to find a private neurologist and while I was waiting for that meeting I also notice that I started to develop tremors in my hands as well as tremors in my arms when I did for example a plank pose for a few seconds (previously to this I could do a plank pose for 1-2 min without shaking). Around this time I also started to notice a burning sensation in my thighs and stomach as well as in my upper arms.

To fast forward.. I went to the neurologist and during the examination he found that my balance was a bit off, and that is suffered from ataxia on the left sight with the reflexes in my hips being hyperexcitable (if I understood it right). He then put me on gabapentin for the burning pain as well as tremors and vibrations/tingling/crawling. I went through a full MRI (head, full spine) and lumbar puncture as he suspected MS but it all turned out negative. After this I have sort of been left to fight for myself as the doctors I have been in contact with consider me to be fully investigated and that I suffer from no neurological issues - it's clear to me that I do and that they are a bunch of dumbasses :mad:

Over time I've changed meds so now I am taking Lyrica by day, and Lyrica and Gabapentin at night (Gaba by day makes me a depressed zombie) as well as a 24h release patch of Neupro (a dopamine agonist).

About 3 months ago I was in a very dark place and when they denied my fourth application for a new investigation I was completely destroyed. For a few days I was considering to taking myself out of this world and then I changed my mind. I will figure this out and I will find a way to heal!

At this point I suffered from constant tingling/crawling in all but my scalp, burning sensations in my whole lower body, stomach, back, genitalia and upper arms. I had also lost sensation in my penis and **** as well as the muscles in the outer part of my ****. I had burning in my feet as well as hands and just scraping my skin with clothes or touching something would result in a lingering painful sensation for 20-30 seconds. In addition I had lost strength in my arms, legs as well as stamina and fine motor skills in my hands - which made me write like a 4-year old kid and left me unable to play the guitar and piano :( Among these symptoms- only the crawling/tingling is eased by movement.

I then found a post online from a guy who said he had suffered from SFN and had cut out meat, diary, gluten and all processed foods plus alcohol and caffeine. On top of this he started to juice green vegetables and taking benfotiamine, ALA, ALC, B12 and omega 3. So that's what I did as well.

Over the last three months I have been on that diet and I have slowly added in different supplements. I have now regained the strenght in my legs and arms, most of the strenght in my hands and a clear improvement in my motor skills. The pain levels have dropped and the tingling/crawling is much less prominent even though I can't managed without the meds. Just recently (a few weeks ago) I noticed that I have regained some of my sphincter function again as well as some sensation in my penis - this was a lucky day I can tell you :) and it seems to increase day by day.
This recovery was preceeded by me starting to take a powerful vitamin B complex (B6 50mg) and since then I have been starting to feel much better overall and my energy levels are much higher.

However, my feet and hands have started to burn like never before. I have read here that there could be that case that when some healing is taking place, that the nerves actually start hurting even more, could this be the case?

When I look at it rationally, that must be it, as since I changed my diet and went on the supplement regime I have greatly reduced my symptoms and my body is clearly healing. But with the new pain levels from walking and even touching things I am scared that it's getting worse and that it just moved to somwhere else?
I don't know if this post even made sense and I am probably rambling, but I felt that I needed to reach out to people that might be able to understand what I've been going through as I have no support from the medical community in making sense of this and most of my friends just don't get it since I look fine and am really healthy and fit.

Thanks for reading this!