Hi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Most EDS folks have vascular issues, even without having the vascular form of EDS. I know I do! But a good geneticist can rule that out for you (I <3 Dr. Clair Francomano in Baltimore).
Let us know, OK?
I am waiting for the geneticist appointment Sept 26th but I was wondering if you could say more about the vascular issues that might be found in the hypermobile type?
There are 6 of us in the family that seem to have EDS. I read that it doesn’t cross over from one type to another within a family.So we are all likely the same type even though our symptoms are different.
It looks like mastocytosis is the problem since I flush and get a fever after every meal, high histamine foods make me very sick. I also keep a mild sore throat, which I did read goes along with mastocytosis. I have to lay down multiple times every day – after showering, drying my hair, eating, using the bathroom, getting hot, etc. It’s not tired, I get very weak and usually feverish. The sudden weakness and body pain is triggered by many things and I think they are all histamine related.
I live with dysautonomia and POTS.
So there is a histamine issue going on. I had never paid any attention to mast cell disorders even after seeing different ones talk about it at the dysautonomia and EDS forums until the doctor said there was a histamine problem. I asked him if that meant I had allergies. He said “no, not at all.”
So I came home and started researching it.
Now I don’t know if he wants to test for it or anything but seeing how the tests can be inconclusive is there any sense in testing for it?