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Ehlers-Danlos Support UK
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Advice please

Hi I'm new here. I'm after some advice on diagnosis of ehlers-danlos. My brother and sister were diagnosed with it as kids (5 years old), I don't think I presented any symptoms then so I don't think I was taken to the clinic. From teens onwards I've had hypermobile joints, I've had 2 operations on one shoulder for subluxation, though all joints sublux, grind, click and give way. I was also diagnosed with ibs after my second operation. I also am anemic and can't absorb b12 but not sure if this is related. Do these symptoms sound like ehlers-danlos and how would I go about diagnosis? Whenever I've mentioned it before the gp and surgeon looked at me blankly.

Any advice is appreciated.

Stacey

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Hi, yes I do think that it sounds like EDS, especially as your family members got it too. I was diagnosed myself 10 years ago with EDS at the hypermobility clinic in London. It's difficult to find a doctor/reumatologist who will diagnose you with EDS, could you afford to go private at all? I'm sure other members of this forum will have some more suggestions. I just want to wish you the best for your journey 😊

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Hi Stacewee, I have been diagnosed this week, it has taken a long time (12 years) to work out what was going on, and i didn't even know EDS existed until a month ago. to get this diagnosis I had to go private and carefully select the doctor I saw, I'm under the Rhymatology department at the hospital for 7 years and although they could say my symptoms where not related to RA, they did not know what was going on, and more importantly did have the time to investigate further.

If you go private it would cost no more than £200 for the initial consultation, my doctor diagnosed me straight away using the new scoring, however i did have other test to rule out other things this is because i already have a diagnosis of RA, so if you need more test i.e. blood test, scans the costs can stack up, but they will quote, try to get any blood test on NHS, fortunately because I'm under the hospital my bloods had already been done, but i had a full spine MRI which was £630.

If you can afford it,Its worth speaking to your local spire or nuffield to get some prices, the initial consultations may be all you need, your GP will need to do a referral.

Hope this helps.

Jan

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Hi stacewee. I am sorry to hear of your problems. We have all experienced a long painful journey to diagnosis. From what you say about yourself and your family, you should definitely see a specialist in hypermobility, EDS as it does seem very likely.Do not be surprised that the Doctors you have consulted with about this have been unable to offer anything. Unfortunately only a specialist in it has the knowledge to recognise and diagnose. Because it affects the body system, it can cause many symptoms and other related conditions. My son and I saw Dr Hakim at the Hypermobility unit in London. It was £300 an hour, but Dr Hakim is very generous with his time. It was money well spent!..If you need any further help with anything please ask, or post other questions. Everyone is happy to help.Best wishes xx

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thehypermobilityunit.org.uk

alanhakim.com

to check out consultants, hospitals iwantgreatcare.org

Look on the Hypermobility association website, HMSA. It is run by volunteers affected by Hypermobility syndromes and EDS. Dr Hakim is also chief medical advisor. There is much information and You can ring them for any advice...

Dr Hakim recommended Dr Ho as another specialist in EDS based in the North of England. She is an NHS rheumatologist at the Manchester Royal. You can ask to be referred there -and to any consultant- under the 'chose and book system', but I believe there will be a lengthy waiting list. Also due to having very many patients, they are not always willing to take on new patients who live out of the area, so it would save time and disappointment if you ring and ask first. It is the rheumatology dept at the Kellgren centre, Manchester Royal Infirmary. If you ring the HMSA or EDSuk, they will have a list of specialist consultants. Hope this helps. Good luck xx

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