@don Thanks! gp referred me onto senior consultant at rheumatology as soon as Bloods/xrays ruled out arthritis etc. Said she was out of her depth and didn’t know much about connective tissue disorders (by this point we had tried anti inflammatories etc and that just got rid of the tiny bit of swelling holding my joints in so I was literally dislocating knees just walking).
I walked into consultants room and he said hypermobile and marfens before I had even sat down. Checked skin, Beighton scale and had a chat and he said we will do a few tests but I suspect Ehlers-Danlos. Looked at my medical history and said definitely pots but we will check you for vascular too as family history points towards a pattern of heart issues and also sound eds too but obviously haven’t had diagnosis. He said it was all too easy to connect the dots at that point and it’s important now that type is identified quickly so that we can predict or treat quickly any problems that arise in the future. Said cardiologist will check for vascular as some markers in Bloods were concerning but not obvious if it’s pointing towards vascular or separate problem and that the departments will work together to ensure that I’m getting the help I need but said at the end of the day there’s not a huge amount they can do and it’s all about finding the right way to deal with things and pushing on.
I was really impressed with how quickly things have gone through, I had heard horror stories and my local hospital is pretty rubbish but I was lucky that consultant knew his stuff and had read up my notes and had a good plan in place.
Was looking at pilates, OH is a personal trainer which is also handy
@Shirl The mental parts are often the worse, I thank the meningitis etc for curing my extreme anxiety and agoraphobia. Slightly too fearless now and rarely anxious apart from about my health… I joke with the OH about him needing a plan for a plan, but I’m probably worse, I just internalise it rather than saying it out loud. Hopefully have plans in place to move forward with after the appointment rather than more questions. I’m at that point in my life where I want to settle down and do the things I want to do and start building a future.