Hi,

My first message here.
I'm 36 y.o, male. vegetarian for the last 5 years,
I first started my neurological diagnosis path 23 years ago, when i was about 13 y.o. I started complaining that my muscles start to burn when i do something continuous like using a spoon to eat a soup or holding a glass to drink water, this affects all my muscles.
CPK levels were at about 300, and muscle biopsy was taken - there was no evidence for muscular disease. Lactate and Ammonia blood tests were taken also while doing exercise and these were normal also.In the following years these symptoms continued. Couple years later on I started to feel 'waves' through my legs and through my hands. It came and it vanished after a period of time. There were also attacks of itching all over my body when exposed to heat. it vanished also. Then there was one time I went to the gym after a year I wasnt there, I exercised too intense for a first time and the next day i could barely do anything, muscles throughout the body were painful. I had rhabdomyolisis with cpk levels at 25,000. It went away after a week with fluids. A second muscle biopsy was taken and again was normal. cpt tests were normal also.
The waves continued. it appeared and disappeared. there were also times where some parts of the skin felt differently - sensitive to touch, burning but it went away after couple of days.
Then came the heat intolerance, I couldnt sleep when i felt it was too hot, I felt like my whole body is on fire. If i used the A/C things were better. 15 years ago my feet started to burn when it touched the ground, as soon as i lift them up it felt great., emg was normal. I think it came and vanished, or the pain degree changed.
There were time i felt i lost my balance, even if i sat on a chair.
Heartburn attacks for weeks, regardless of food.
The last two-three years, my palms started to get very cold when exposed to cold weather. color didnt change so it wasnt rynaud. sometimes the palms got swollen and painful, but it went away after several days. now the cold hands are almost constant.
Rheumatologic diagnosis was all OK, except for positive RNP, but ANA was negative, so they said its not that.
A year or more ago I started to feel strange when i used my mobile phone's touch screen to write messages, the screen felt different. Now it really hurts to tick the screen, the tips really hurt.
It seems like i lost the temperature and the 'real touch sense' in my palms and feet fingertips.
I'm also having bowel issues in the last months - lots of gas, in the mornings i can even go 4-5 times to the restrooms. I can see undigested food in the stool.
stool tests showed blastocystis hominis. Took flagyl antibiotics for a week, but the parasite is still there.

I had a skin punch biopsy to try and diagnose a small skin colored papules on the dorsal and dorsum. They couldnt identify what it is but one of the findings was: dermis changes including mild pre vascular inflammation changes - fibrosis.

I'm supposed to have genetic tests in 10 days for sodium channel mutation.

I'm looking for your help in trying to find the cause for this thing, what tests should i ask my doctors to conduct, what is the best center in the world to try and diagnose and treat this thing. any help is appreciated.