Hi, I've come back to try and get awnsers. Im having very hard time getting not only help but symptoms getting worse by day.. It started 3 years ago with unusual cervical pain. I'm a chronic pain patient so I toughted it out. Than year 2, my shin started crawling and started twitching. Not just little but all over. Bfs was established but then each time I ad an attack I started to lose fat. The good kind. I was finally diagnosed with lipodystrohy but no known case. I was getting weaker, my pain level out of control, buzzing behind one eye.. Didn't lose weight with the fat lose tho.
Fast forward to now.. After 4 Neuro , obe endo and every test you can imagine even the Lhym one sent to special lab. I now have joints, bones, slipping out of place, exhausted more than usual, vision 2 new pair glasses , lost a shoe size and 3 bra sizes. But worse is sun, cannot handle heat or sun. The only disease associated with lipodystrohy is lupus and diabetes. Autoimmune lipodystrohy is acquired. I'm in peri menapause. They have only 2 things left and are resistant to do a muscle biopsy and spinal tap. When I look EEG is only showing tarsal tunnel. Baloney I do have tarsel tunnel I've had it before bad this is not it...
If I just was habing BFS I can deal with twitching. But the other symptoms have almost put me in bed..