Hello
I am diagnosed with Behcet’s Syndrome and ‘primary hyper mobility syndrome’. I have excellent care and support from a specialist centre for Behcet’s but don’t know it understand hyper mobility that well despite having the diagnosis for over 7 years. The rheumatologist who diagnosed retired after a year. He referred me to a very good physio who treats my mechanical issues but I’m not under anyone else for this. The rheumatologist at the Behcet’s centre says that I have hyper mobility too and this is the main issue with my joints not the auto immune. He had tested me and I scored 9 out of 9 in the Beighton. The latest time because of swollen joints I scored only 4. It fluctuates as I have so much stiffness and fluid.
My symptoms that I think are related to hyper monitor are:
- cracking and painful large joints
- frequent subluxations
- rib and chest pain
- a hiatus hernia
- bladder incontinence and beginning of a rectal prolapse into my vagina
- dizziness when standing up or when raising my arms over my head
- bruising easily
- insane stretch marks and very translucent skin
I don’t know what to do to understand and get support. I was thinking about ringing the UK helpline tomorrow to see if I can get some more advice and be tested Eds. I’ve asked my local rheumatologist to do this but he said ‘ I don’t understand Behcet’s or EDS enough to help you’. I feel quite abandoned by it. I’ve forced him to refer me to the hyper mobility/ rheumatology department at UCL. Will this help? Am I on the right route?
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