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EDS? POTS? MCAS? Advice for diagnosis in Surrey

happyraindrop28happyraindrop28 Member Posts: 1 Listener
in Undiagnosed and rare conditions
Hi, I'm new here. I have been referred to a rheamatologist (sorry about the spelling!) by my GP for meeting criteria for POTS, EDS and possibly mast cell activation syndrome. I already have type one diabetes (well controlled always) and various other things which has led us to this including migraines, IBS etc. I am due to see the doctor this week and am wondering if anyone could tell me what to expect and if anyone has any experience with the services at the Royal Surrey County Hospital. 
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Replies

  • elbestelbest Member Posts: 38 Connected
    Hi, I have EDS which was diagnosed privately as rheumatologists I saw over the years didn't even suspect it & my doctor had no knowledge of it. You are very lucky that your doctor was knowledgeable- it's taken me all my life to be heard! I suspect you will be asked lots of questions, make sure you take some reminders for yourself of how it affects you as there can be an awful lot. You will then be referred to a cardiologist if PoTS is suspected, I am awaiting my appointment for this after passing out recently - but this has been happening all my life. You will be examined and asked to do various movements and they will test the flexibility of your skin. As for MCAS that probably will mean another specialist. I had an anaphylactsis over some vegan cheese and am very sensitive to drugs and certain foods so I carry an epi- pen but have yet to know whether I have this. I hope that it goes well for you and get some answers I know how awful it is not knowing what is going on in your body, best of luck.
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @happyraindrop28 and a very warm welcome to the community! I hope you get the answers you are looking for and get advice from the community. If you need anything then please do not hesitate to ask! :)
    Community Partner
    Scope

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