Sorry I can't help some way, I have never heard of this. Have you searched web md?

                  Sludge      

Pinkers,

I am sorry to hear you have a connective tissue disorder too they are no fun! I am kinda of at the same point you are. They think its OI but they are not sure, it also could be Elhere's Dahnlos syndrome.  As for symptoms they include: Hearing loss, Easily Broken Bones, Vision problems, loose joints ( hypermobility), elastic skin, blueing of the optic nerve, thin teeth enamel, easy sprains, problems with walking because of my ankle joints, balance issues from the hearing loss and vision problems, weak eye muscles as a part of the eye problems, just to name a few.  As I said I was just diagnosed a little over a year ago.  They can't tell me for sure what type I have, just that I have a connective tissue disorder. They believe it to be OI because of the easily broken bones, the blueing of the optic nerve ( though usually it is the whites of the eyes that blue), the problems with the enamel. As of right now everything is being managed by hearing aids, glasses, physical therapy, braces, crutches, eye therapy, casts as needed and surgery.  The scary thing is that all the testing was done at the Mayo clinic. A world renowned clinic can't tell me what is going on, just that they have never seen anything like it before.  What do your syptoms include? if you don't mind me asking? How did you first find out ? How old were you?

Thanks for your kind words and your support!

Brianna

pinkers,

The whole RA, Osteoarthritis thing is pretty common with connective tissue disorders from what I have learned. A lot of people have really flexible joints when they are younger and then they lose the flexibility as they grow older resulting in arthitis.  There is a small subset of the CTD population that also has something called a hypermobility syndrome meaning that their joints are also hypermobile because of something other than the CTD and they will most likely never lose this hypermobility. These people have problems with joints hyperextending and such when muscles that keep them in place become weak. I am part of this small subset. I was diagnosed a couple months ago with a Hypermobility Syndrome.  Because of this I wear Braces on both feet, although I can't wear one on the left right now because of open wounds (see post called biopsy) because if I don't my ankles will give out and touch the ground. I also use forearm crutches. I do physical therapy exercises everyday! Depending on where you live, I would encourage you to come to Minnesota, to the Mayo Clinic to get the Arthritis looked at because Arthitis with a CTD can be really bad, and it needs to be determined for sure which type you have. I have met and know a doctor of rheumatology at Mayo who is very nice and very competent! he will help you if he can!

I hope this helps, I pray for you!

Brianna