alone in my disease - Myositis Message Board

jenimami · 04-07-2007, 04:56 PM

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.

MaryNY · 11-02-2007, 01:12 PM

I am truly sorry that you have the focal myositis disease. I have been currently living with Focal Myosits for 5 years. The original diagnosis was through arm biopsy during my second pregnancy 5 years ago. I would enjoy actually having a conversation with you. My current diagnosis is Recurrent Multifocal Myositis. Basically, that is recurrent masses is several areas on my body. I have had 6 areas that have had masses and I have been on so many meds and pt. Please contact me

Styller117 · 11-02-2007, 03:48 PM

Dear Jenimami,

I was touched by your story i just read. Dont give up trying to figure things out. I live in Mass my sister lives in deltona Fla. She has been flying up to Mass General for a problem with her pituatary. In Florida they diagnosed her with a very large pituatary tumor. They told her radiation or surgery. It was very close to her brain stem. I told her to come home. I brought her to Mass General sat down with Neurosurgeon who just came out and said. Now who told you you had a tumor we were dumbfounded. To make a long story short it was an inflammed pituatary that was caused by secondary addrenalin deficiency. (sorry about spelling). There are doctors who are learning new things every day. There are new cures or new medicine to help. On line there is alot of information.

God Bless
Sty

garethsgirl · 11-02-2007, 04:09 PM

It's good that there is somewhere where we can talk about our worries and fears without worrying our families and friends . Sometimes just knowing that there is someone else out there that knows what you are going through is enough . You all seem to have a lot of inner strength and you are an inspiration to me . Take care , Sharon

Georgia23 · 01-12-2008, 01:00 PM

I feel very alone. My daughter is only 23 and is having symptoms suggestive of dermatomyositis. She had a rash on her neck that suddenly appeared. After using some OTC cream it went away but reappeared a couple of weeks later. Then had it biopsied and came back as possible early, subtle sign of DM or lupus. Her ANA is negative. However, I believe she had a symptom of Raynaud's a couple of weeks ago. She has an appointment with the rheumatologist next week. Autoimmune disease runs in the family. I have not been able to think about anything else. Please help. I am so worried.