LUPUS UK

Looking for KIND Rheumatologist in Essex

So my journey has been a long painful one, I am not yet officially diagnosed but have positive ANA, Anti DNA and am totally disabled by what I and a few other docs think is Lupus or a connective Tissue Disease, I also have Hashimotos and lots of other high Autoimmune Antibodies.

My positive tests go back to 2002 and my symptoms since 2000 and I actually totally gave up on doctors as no one could give me a diagnosis - I dont ever want to get in that merry go round again

I have nearly every symptom on the criteria including total Sun sensativity, rash's and as I say am so disabled I can no longer walk more than a few steps and much more

I made a decision 3 years ago I would never see another doctor even if I was dying.....well I pretty much feel I am and my pain and symptoms are so bad I am going to try once more

So I am looking for a sympathetic doctor that will treat me as a human - Is there one???

Thanks in advance and please PM me if you can help

x

6 Replies
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Hello riannabri. Am v much feeling for you. I'm sure you'll get great replies. Paul_Howard at the Lupus UK head office is always very helpful to anyone seeking consultants with expertise in immune dysfunction & connective tissue disorder. He will see your list tomortow, I hope. You can also send him a private message

I attend rheumatology's connective tissue disorder clinic at Addenbrookes in cambridge which is quite near Essex. I've heard of essex patients being referred there. I live in Suffolk, but managed to push referral through. I too had a long history of multisystem conditions and diagnostic ambiguity. All the consultants I've met at Addenbrookes Rheumatology are kind and very experienced, plus we have a great lupus specialist nurse.

Wishing you every best wish

🍀🍀🍀🍀 coco

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St Thomas's Hospital in London has a Lupus Unit. Ask your GP for a referral. Good luck x

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Hi riannabri,

I'm sorry to hear that you are so unwell at the moment and have struggled in the past to get a confirmed diagnosis. Unfortunately diagnosing autoimmune conditions like lupus can be very difficult and take a long time potentially.

Whereabouts in Essex are you based? It's a large county and I wouldn't want you to have to travel further than you need to.

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My first Rheumy appt is next month at Broomfield hospital, Chelmsford, so I'll report back to you on how kind they were :)

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I've had my rheumy appt at Broomfield and saw Dr Win Win Maw - she was nice, listened to me, questioned me, examined me, ordered further tests and made another appointment to see me in 3 months... We will see how she is if my tests come back negative - which they usually do!!

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I went to London Bridge and saw Prof Hughes and Dr Lanham, the kindest doctors I have ever seen xx

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