Hi all - I have Sjogren's and connective tissue disease, but over the past year I have been in excruciating pain and been to the GP and physio, and from what I've read here and what my physio indicates, I think I may have EDS (I know I am hypermobile). I have my annual appointment with my rheumatologist at Kings in London next week and I want to go armed with all the info I can for a proper diagnoses or referral to a specialist. Incidentally, I have had a few cardiac issues lately, and the GP did a 24 hour monitor, which said I had some ectopic beats. They waved me off saying that I should "watch it", but from reading here it seems that this, too could be related to EDS.
My question is, it seems that the key is to get a hypermobility specialist to see you, as not all rheumatologists know about this so much. From what I can see on the EDS support website, and the HMSA website, the only places with NHS hypermobility clinics in London are UCL on Euston Road, Stanmore Royal National Orthopedic (which is not taking on new patients), and London Northwest Healthcare. Does anyone know of any different ones, or are these the ones I should mention to the doctor? I live in Surrey, but can travel to any London location.
Thanks so much, this forum is very helpful.
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WpgGirl
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Hi wpgGirl. Sorry to hear of your difficulties,but you are quite right in pursuing a correct diagnosis as EDS is a multi systemic condition and can affect you in many ways.. In my experiences, general rheumatologists dont understand the affects of hypermobility and have little or no knowledge of EDS..
My son and I are going to see Dr Hakim in the London Hypermobility unit at St John & Elizabeth's hospital next month..It is private, £300 for the initial consultation and I think a follow-up appointment is less. From what I understand, you can get a diagnosis in this consultation and then a diagnostic letter is sent to explain about any offending body systems.If additional referrals are necessary,you can be seen by other consultant specialists in the NHS. We did get referred via our GP who has sent various test results etc, but I believe it is possible to self refer.The waiting time has been just over a month for this first consultation.
Stanmore are now taking on new patients as I went there and finally got correct diognoisis two weeks ago. Been to others listed and privately but short sweet apt with Alan hakim said hypermoble only. Year later with menopause symptoms dramatically worse my gps physio said I had eds and pushed until Gp got me apt at Stanmore. Going down hill each week but still not as bad as lots of others so grateful. Hope you get the help you need. Just don't stop asking as you will finally get the correct answer whatever that is. Just make sure they do a really througha exam and questions (about an hour) good luck keep well
Thank you all for your comments. I've just left my rheumatologist apt which was frustrating beyond words. I feel like crying. He effectively shrugged and told me to exercise more. At least I got him to refer me to UCL Hypermobility clinic. He didn't want to ("I don't know the point of it - we already know you are hypermobile") but I insisted. It's going to be a long road ahead. Thanks again. X
Frustrating to hear isn't it. Diognosis means to me that all the additional issues make sense, you get a through check up if heart etc issues. I have very high instadance of sudden early death from brain hemirraige which no one knew why. Now I've got diogonosis it's being taken seriously and I'm going to have regular scans. In addition family friends and colleagues suddenly take your pain and injurys seriously. Your not just lazy! I wish I knew what to say to these people that want to minimise what's going on for us. It happens all too often!
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