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Diagnosis and support

VickiOliver profile image
4 Replies

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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VickiOliver
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4 Replies
Shhilo profile image
Shhilo

Hi, Really sorry to hear your plight, but glad to hear you have diagnosis!

You might like EHLERS-DANLOS SUPPORT UK

I joined and get their magazines. Also there are local support groups, I think on their site.

I wish you the Best of Luck!

🌞🌻🌼🧚‍♀️🧚‍♀️🧚‍♀️

VickiOliver profile image
VickiOliver in reply toShhilo

Thank you. I’ve been on their website and think I may give them a ring

AliPixie profile image
AliPixie

EDS support helpline is brilliant. Here’s the info, give them a call as see what they say. They understand the pure frustration of the NHS too ;)

ehlers-danlos.org/support/h...

VickiOliver profile image
VickiOliver in reply toAliPixie

Thank you. I had called them last week and left a message but haven’t heard anything back

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