Hi there all, well I've yet to see anyone with my problem. Even doctors are floored. I was diagnosed with chronic focal myositis. Just wondering if anyone out there has it too.Mine is rare it started at 7 years old and is in only one area,my thigh. There is hardly any muscle left there now. I'm 28. Like many others with this very rare disease I've been through years of pain, confusion and frustration. Over the years I've learned to deal with this the best way I can. Doctors say they've yet to hear or see of this. Soon I'll be on my way to the Mayo clinic in Jacksonville. I know there is no cure, and treatment for me is unlikely, I've had new unexplained body problems that I can't deal with so I don't feel like waiting 17 years to be diagnosed and am hoping they can help me. I have a son who is my everything and I will not accept waiting. Life is too short. I just want to let everyone know although mine is one of the rarer ones I guess I'm lucky. I feel for those who have it in two or more areas or rashes from dm. I feel for all of you.Some advice to you mothers or fathers who have children with this, I can't tell you so easily, oh things will be ok and keep your head up, now being a mom myself I know those things are easier said than done, I can tell you to trust your gut instinct. Doctors don't always know. Research. Second guess ,do what you have to do get to the bottom of it. This one quack of a doctor insisted it was my knee that had something wrong.We insisted it was not for a month. We were right. If any of you out there are finding you're at the end of the road with no cure or treatment, I'm very sorry for you, I have however not been sorry for myself , I'm thankful for the joys that I'm given everyday. I'm not trying to sound cliche' but it's true. You can let this thing ruin your life or let it make you appreciate everything else. Love and Luck to you all.