Am I wrong in thinking I could have a connective tissue disorder or should I be unconcerned, after all if there was a connection between these referrals wouldnt my GP realise ?
Hi Nellie, Welcome!! I had to chuckle a little bit at your last statement. Unfortunately, MOST GP’s in my experience, are uncomfortably out of their element with connective tissue disorders. We are patients ‘on the fringe’ and so the doctors cringe. (ha). I don’t know how your rheumatologist differentiated hypermobility from a connective tissue disorder — if it was just a guess, you may want to see a geneticist who is familiar with the clinical diagnosis of EDS (can you take a peek at my video about how to find a doctor? There’s some advice there. At a minimum, I would think a skin biopsy would be in order… You and your family have many of the markers of a connective tissue OR a fibrillary disorder (“Marfanoid Habitus”) and you’ll want to be sure other similar conditions are considered. I think that we can’t usually go wrong when we listen to our gut and your gut is saying something is up. Right? Sure — it may be nothing, but I remember the relief I felt when I actually had a diagnosis. I finally knew the name of the beast I was fighting! Let us know? Big hug…