Angel, I'm sorry you've had to struggle with arthritis so long and that it took them so long to diagnose it.
My daughter is 10. She's been having neck pain since she was 8, but the MRI done at age 8 showed no signs of damage at that point. She was diagnosed with uveitis 3 months after the neck pain started. We live near Boston, which is fortunate because there are so many good doctors here. She is under treatment for the uveitis at MERSI in Cambridge, they are absolutely excellent, people come there from all over the world, and her rheumatologist is at Children's Hospital Boston.
She's been on a low dose of remicaid/methotrexate (after going through several meds to find what works) to control the uveitis, but her neck kept hurting anyway, unpredictably off and on, and bone damage showed up on the MRI done this fall, so clearly there's been some kind of inflammation creeping away despite the medication. They bumped her doses up after seeing the scan, and they're sending us to orthopedics to consult about "the stability of the bone structures". My daughter's case is very unusual, the arthritis is in her neck only. The only way to track the inflammation there, I was told, is with regular MRIs. It's too early to tell the prognosis yet for her, they say.
We joined the arthritis foundation last week, Children's Hospital gave us the phone number of one of their people (she was so lovely on the phone), because I was asking if there were good books I could read. The woman signed us up for the foundation and is going to mail a book to us, and she recommended another one, too.
You will find a lot of information on autoimmune disease in general and RAD itself on Spark. How old is your daughter? Juvenile RA has its own set of issues connected with it. I was diagnosed at age 16, but had been showing symptoms for at least 2 years previous to diagnosis, but they were dismissed as minor injuries or "growing pains". That was long ago. Fortunately treatment for youngsters has greatly improved since then. Depending on her age, your daughter may need specialized care, as not all physicians are up on relevant developments in JRA. Feel free to bring questions to this forum, for we do have personal knowlege of many meds and treatments, and also know and use expert sources you may not be aware of yet. The Arthritis Foundation was particularly helpful to me early on, giving me information on exercises I could do at home to maintain mobility in affected joints, diet changes that some find helpful, home pain management techniques and information on medicines in use and how they work as well as possible side effects. You can find them on the internet. Some of their information is available on line, others thru their publications. It really helps to be proactive about treatments and meds. Learn all you can and come armed with written questions to Dr. appts. God Bless!
"Mountains DO move...One stone at a time." ~Rick Beneteau Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach With exercise, doing some is always better than doing none. - Spark article MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.
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Fitness Minutes: (34,796) Posts: 7 12/11/12 8:24 A
Hello, I don't have RA, but my daughter does. At least I think she has RA. She was diagnosed with arthritis recently, in her neck only and nowhere else. The latest ct scan showed erosion of bone, and the rheumatologists want us to talk to an orthopedic surgeon, though there is no rush on that. She also has uveitis, which is under control right now. She's on remicaid and methotrexate.
She has a really good attitude. So I'm here on this group hoping to find support and tips, because I can see our family has got quite a journey ahead.
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