Hello hello! I'm on a couple other boards here, and thanks to Barnclown was told about this place as well, so I would like to give a brief introduction. I've been diagnosed with seroneg RA, fibromyalgia, and have suspected lupus for some time although bloods are almost always inconclusive. Recently, my ex-husband started dating someone with vascular EDS, and a few months ago he called me and said 'You need to get this checked out. Every single symptom is you.' I was a bit dubious - I'm not especially 'bendy' - maybe due to the RA, but also potentially due to being a former bodybuilder; my muscle and bone density might have masked the connective tissue problems. However, the more I read into things (stretchy, see through skin, bruising in a strong breeze, healing from even mild surgeries is a nightmare of infections and skin refusing to knit, forming deep pits of scar tissue, nearly bled out when pregnant, several miscarriages), the more I thought it might be a possibility.
This week I went to see my rheumatologist about my RA, but had also mentioned the vascular EDS. At first, he seemed to want to humour me, but when he realised there's blue sclera round my eyes (I didn't even know I have this) he became more interested and ran through a few tests. My skin is definitely stretchier than I thought it was (that would explain why I've had 'bingo wings' and stretch marks all my life no matter how hard I trained!), my elbows seem to hyper extend and skin is definitely a lot more see-through all over than I previously knew. My blood pressure has been going through the roof and my GP hasn't been taking it seriously, but now my specialist is on the case. He has requested I have a referral in London as well as a scan of the aorta in my abdomen. I know him well enough now that when he says 'Interesting' in a particular tone of voice, he has found something.
Now, nothing is confirmed yet, but I'm reeling. I have friends with Type 3 EDS and so I'm familiar with everything they go through, but I would have never thought in a million years this is something I might have myself. I'm at an utter loss, and while I'm trying not to consult Dr Google or read too much into things, I do have the EDS UK sites in my bookmarks and the more I read, the more I think 'Wow, this may actually be me'. I've no idea what to do with the information yet, but....yes, there it is.
I have no idea what happens in the London clinic. Anyone have any advice or could give a reassuring word? What do I do now? I am of a mind to go to the GP and ask for help with the blood pressure but I don't want to kick up a fuss yet until I know for certain what is going on (especially as my experiences at this GP surgery have been a bit of a mixed bag, and I'm hesitant to get another lecture of Just Lose Weight). In any event...this is me, thanks for having the group, and I guess we will see what we shall see.