@mrs-b I totally get it! Bracing myself here for warmer weather and an upswing in my symptoms.
@mrs-b I totally get it! Bracing myself here for warmer weather and an upswing in my symptoms.
@AGBF I have Ehlers Danlos, a connective tissue condition. I also have probs with my mast cells. They live in connective tissue and because mine has not formed properly it releases mast cells at the drop of a hat to have a party, causing issues with BP, pain, fatigue (like an allergic reaction). Heat is a trigger for me unfortunately!
@AGBF You are totally not being dense! There is no genetic test for hypermobile EDS. There is for other types. Everyone is affected in differing ways and differing degrees.
Check out the Ehlers Danlos Society website for tons of useful info.
It maybe is worth considering an evaluation for your daughter.
My daughter was evaluated for EDS and marfan when she originally had her scoliosis diagnosis. She is 6ft and has long arms, legs and fingers. She is also very flexible. Before doing her fusion surgery they had to rule out other factors. They did genetic testing to look for the marfans but EDS testing was not available. For the marfans she had to do scans of her heart and other things to rule it out. She didn't have all of the "normal" features for marfans and ended up not having other underlying factors for EDS. It ended up that she is just long and lanky with a large growth spurt in a short period of time which progressed the scoliosis. The whole long post just to say....I had never heard of either marfan syndrome or EDS before we started ruling out underlying causes for the scoliosis. Since then we have had a Real Estate agent that works in our office with EDS and she goes through patches of being very ill. It is interesting to see how the heat can increase symptoms. Thank you for sharing!
I shared in another post that my daughter was also tested for Marfan Syndrome. She did not have it, but the echocardiogram she had for her work up revealed she had mitral valve prolapse.We are quite a little club.
@mrs-b
i took this picture for you last night as i wondered how you were doing, its covered in flowers
this little guy lives in the WC
he shimmies down to take a look at me most days
Made me smile, @Daisys and Diamonds - how delightful!
Today was a tough day. I had to have a CTA scan of my head and neck, and it took 2 techs, 3 nurses, and 7 attempts to find a vein. When I got home, I had a telecon with the head of colo-rectal surgery at BIDM in Boston, who told me I was looking at surgery for a stricture somewhere down the track. (...there's a pun in there somewhere...) And then my gastro's office called me, telling me she wants a telecon with me tomorrow to tell me the results of my capsule study.
Suffice to say - my stress limit has been reached for the day.
On the other hand, the weather here was GLORIOUS today, and my husband, Tim, and I went for a walk this evening, which was just delicious. So there's still joy in the world.
@mrs-b prayers outgoing and on going.
How is your daughter doing now. I am going to see if I can find that post. My daughter did not end up having any heart issues other than very slow heart rate. It ended up that she is very fit because she is an athlete. She does have a large "wing" span but not unusually so given her height. Being 6ft tall at 14 and having it bring more attention was irritating for her. Due to her flexibility (one of the many checks was her thumbs being able to bend up and touch her forearm) it needed to be ruled out. I will have to look at the checklist they used for both conditions. It seemed so stressful at the time because so many things were being thrown at us at once.
She is on the other side and is now (still) tall, athletic and fused from t3-l2.
CRP is high.
Thinking I might sneak a piece anyway....