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I'm 22, I've had it since I was 11. It has only marginally gotten better. I can walk now but pain is constant. I walk crooked, my spine is damaged, I have atrophied muscles in my back/neck/legs/arms/and hands, I take risky medication (cancer causing). I grew up in the hospital, was clinically dead for 47 seconds, coma 11 hours. I've ridden in ambulances and helicopters. for everyone out there with this.
WorldOfKaroo 3 months ago
@jasoncook1979, what treatment have you gotten so far?
cillajeanluvmayn 4 months ago
I have this disease. I was diagnosed in 1991. I was in a research study at NIH. I had a positive result with the IVIG they gave me. Since then I get my IVIG infusions each month at home. I am on my iv right now! I highly reccomend this treatment. Stay off the steroids if you can. BTW your audio is not working well. I can barely hear you! I also take 10 milligrams of imipramine for muscle pain . I wish you the best. :-)
cillajeanluvmayn 4 months ago
I have this ridiculous disease..... its definitely a pain in the butt. was DX'd almost 3 years ago.
jasoncook1979 1 year ago