By Lori on Friday, February 07, 2003 - 04:29 pm:

Just came back from the pediatric rheumotologist with my eldest son. For years now we have had doctors commenting on his laxicity(sp?)/loose jointedness. We went to a geneticist to discuss Marfan's syndrome, and while they couldn't completely rule it out, they were thinking that he didn't have it. However, after taking the family history, the geneticist did say that there was definitely a defective connective tissue gene issue. I didn't think anything of this.
Well, with all of his achiness, and the fact that he has always been a poor sleeper, I figured we might be dealing with fibromyalgia. The rheumie said he doesn't have classic fibro, but said that due to his hypermobile joints, he is suffering from the arthritic arthalgias....that are not true RA, but due to the loose joints. He also said he has a good chance of growing out of it somewhere in his mid twenties. Well, I never have.....but then, I have Mixed Connective Tissue Disease and Fibro.......Have any of you heard of this? I really wish that someone had told me sooner that hypermobile joints could cause all of these problems!!! Lori

By Shazinoz on Friday, February 07, 2003 - 06:27 pm:

Lori,
Arthritic Arthralgias, just means arthritis joint pains. Has your son have his CRP and ANA levels checked to rule out JRA and the like. I was diagnosed with JRA and sero negative spondo arthritis at 12 yrs old, I did grow out of most of my arthritis problems (although I do still have an elevated CRP (it is up around 13 or so). If you have mixed connective tissue disease then has your son been tested for this. i was suspected of having this at 12 too as I had the arthritis and raynauds and more, and have a strong family history of SLE and Sjogrens and cryoglobulanaemic vasculitis and other auto immune diseases.
I was thought to have MCTD at about 12 years old (or so my medical records of that time show, But neither I or my Mother were told this, Lucky I guess I tracked my records down under the freedon for informtion act). Nothing was ever done about this and nothing still has but it seems more likely that I actually have HEDS + Raynauds.