February 13, 2012 at 12:33 am #108HorseHappyParticipant
OK, so there I was, happily tracking down the very likely VEDS on my father’s side of the family. I had posted photos of some of my “signs and symptoms” in an album on Facebook.
Well….one of my aunts comes on FB and asks me “What is EDS?” so I started explaining it to her. This is when she tells me that she could definitely do the thumb to the wrist thing and the pinky fingers beyond 90 degrees…and oh-by-the-way…I can slip my hip in and out of joint, is this what you are talking about? I ask her if she could ever bend over, knees straight and put her palms flat on the floor. She didn’t answer BUT…
Here comes aunt #2… “When my tibia isn’t broken, I can do that….”
Wait just a cotton pickin….
I post the Beighton scale exercises and ask them to see how many of them they can do and to grab any nearby kids / relatives and test them.
Aunt #2 comes back a 9/9. Her daughter, my cousin, comes back an 8/9. Aunt #2 also informs me she has MVP, an inner ear autoimmune disorder and Reynauds Syndrome.
This would have been helpful to know BEFORE I sent my pre-visit questionnaire off to Dr. Francomano…*sigh*…..only been asking them for several months now about any hypermobility they have or know of in the family.
HOWEVER! It does explain a lot! Such as why my father and his sister are pretty obviously VEDS with little to no hypermobility beyond the finger and wrist joints (very few outward signs / symptoms) yet I score an 8/9 on the Beighton. As a side note: my maternal grandfather, I believe, had the Marfanoid Habitus….tall, lanky, long arms.
So…it seems I’m having the all you can eat EDS buffet tonight….the possibility of having TWO types of EDS.
Pass the salt please….I need it…I’m pretty sure I have POTS as well…and Lord knows what else.
HHFebruary 13, 2012 at 9:26 am #1740sarahdionnaParticipant
I have been finding out recently that my family has a lot of hypermobility as well. My older brother can dislocate his shoulder at will. It was so freaky to watch him do it. His lung collapses a lot as well. I am actually more afraid for him that I am me, though I seem to have a lot more going on than him.
Hang in there and I hope doctors figure you out soon! 🙂March 4, 2012 at 2:47 am #1776HorseHappyParticipant
I need to schedule an appointment with the Mr. Dr. Driscoll for an updated eye exam. Linda from Dr. Francomano’s office e-mailed wanting the results from my 2009 eye exam saying that once they have those they can schedule me an appointment. Problem is that it was an “on the fly” exam that I got after I lost my glasses while out of state…so it was pretty cursory. Just enough for me to get a pair of new glasses. I’m not even sure I remember where I had it done other than somewhere outside LA in California (O,o)
HHMarch 4, 2012 at 11:56 am #1779PalominoMorganParticipant
Gotta love the info. Bring that info from you aunts with you to your appointment with Dr. Francomano though. Jessica will spend a while going through family history with you in person before Dr. Francomano comes in. You can share those tidbits then. 🙂
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