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
Written by
riannabri
To view profiles and participate in discussions please or .
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.
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.
My first Rheumy appt is next month at Broomfield hospital, Chelmsford, so I'll report back to you on how kind they were
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!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.