Someone's wrong , need awnsers after 2 years.

[Bfloyd]

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..

[Lulu54]

Lead poisoning?  I hope the treatment is quick and effective. I'm glad you got answers to your medical mystery. Thanks for coming back to let us know the answers.

[Bfloyd]

Wanted. To say I think we found the issue. I have lead and extream gadolinium posioning. This has deteriated me to practically nothing. Thx for all the help

[Lulu54]

The misery of having something wrong and not knowing a name for this
must be horrible. I hope you get some answers very soon.  Please come through and ask all the questions you want - this is a smart and  sharing crowd. Laura

[Bfloyd]

Yes that's why I have not checked back into MS groups or much Internet stuff. It's most likely autoimmunie .. RA and lupus run in family. There is Aquired lipoatrophy that they don't have reason .. But the few in world I've found to have it don't have all these symptoms. Im ready to head to mayo clinic. Cannot mess with this much longer. Thank you..

[Lulu54]

wow, you have it rough.  There's something in all this that doesn't sound to me like MS, but I can't tell you what or why.  Good luck in getting through this with your doctor - you need a really good one to work through this mystery. ~Laura