I am new to this site as well. I am 44 and was diagnosed with EDS in my 30s, which was cause to have all four of my children evaluated. Long story short, 2 of the four were definitely a yes, one was borderline, while the oldest showed no signs, but based on early history, it was thought she may have it too. She was and still is a competitive swimmer, which may have helped improve her loose joints. Sadly, when our geneticist left, I didn’t follow up with a new doctor and now deeply regret it as my youngest, age 12, is now having a lot of issues and is in bed instead of school as I type. I can’t get in with a new doctor until June, but some tests have been ordered. All of the above about her are true, along with many other things(PVCs,blood pressure issues,high carbon dioxide at night with no apnea or shallow breathing, food intolerance to name just a few.) Her MRI was actually ordered by her pulmonary doctor(she has had severe asthma as well since she was a toddler) and she admits she is not sure if a finding is significant. Here is the finding that confuses me. I will add, no signs of Chiari were found.
A few tiny punctate foci of T2/FLAIR signal abnormality are noted in the juxtacortical and deep
white matter of the right frontal lobe and in the periventricular white matter adjacent to the atria
of the left lateral ventricle, a nonspecific finding. The brain parenchymal signal is otherwise
normal. There is no associated magnetic susceptibility to suggest prior hemorrhage or axonal injury.
She is having a chart review Wednesday and I would like to be prepared. Do you know if this could be related to EDS in any manner?