[Stellatum]

Hi, everyone. I hope you will forgive my posting this here. This is where I know people, and I just feel the need to dip into the pool of knowledge that this group shares, even though it's not directly an MG question.

My 14-year-old son is a tall, thin, and lanky fellow, with wide shoulders, a flat rib cage, very narrow hips, and loooong fingers. He goes to the cardiologist once a year because of possible Marfan, but she says she doesn't think he has it. She says he probably has some as-yet un-named genetic connective tissue disorder. His aorta measures border-line, so he has a yearly echo to make sure it doesn't stretch too far as he grows. He used to be hyper-flexible, but not so much any more.

His 17-year-old sister has a similar bone structure, but she has a diagnosis of Alagille Syndrome (mostly heart and liver), which my son doesn't seem to share. Their father is lanky, too, but the cardiologist found no signs of Marfan with him.

So, anyway, my son suddenly has weird bumps on his fingers, near, but not on, the joints. No pain or fever. I took him to the pediatrician. She knows the family history of autoimmune diseases, so she ordered these tests: CBC, ANA, ASO, CRP, and ESR. We'll have results Monday, but I know that they will be non-conclusive and non-specific.

Meanwhile, something is tugging at my mind--some connection between his lankiness and these new bumps. I keep reading the list of Ehlers-Danlos, and it doesn't fit. He hasn't had sprains or broken bones, and his skin isn't stretchy or saggy. He's healthy. Had migraines for a year or so, but they went away--he hasn't had them for about two years. I just remembered that the ophthalmologist once mentioned he had a harmless, but unusual, thing in one eye--some residual...I don't know. A piece of tissue or fiber that hadn't separated all the way.

I'm just asking: does this picture ring any bells? My first thought was rheumatoid arthritis, because of all the autoimmune diseases in my family (thyroid, MG, severe atopic eczema). If any of those numbers come back high, we'll go see a rheumatologist. But I'm worried, and I feel like there's something I'm missing. Any suggestions? Thank you, thank you.

Abby