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Discussion Starter #1
hi all i am going to be in london in august and because i am gettin no help here i have decided to see one of the lupus specialist in london bridge
any advice on which one i should see i imagine thay are all good
thanks
alex
 

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Hello Alex

I would expect them all to be top of the range since Dr Hughes heads the London Lupus Centre and presumably handpicks his team. Certainly many of them are more high profile than others especially those whom we know well because they also work at St Thomas' NHS Lupus Unit. Let me know when you're in London - maybe we could meet up if there's time. :)

Cheers and good luck
Clare
 

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Dear Alex, I am still trying to reach my Irish friend as her mail box is full. I have seen Prof. Hughes and Dr. D'Cruz they are both great.
So glad you are coming.
x Lola
 

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alexbelfast;509808 said:
hi i got an appoingment in august with
Dr Arvind Kaul
has anyone else see this dr
alex
Hi Alex,

I saw Dr. Kaul today for the first time. I posted after my visit to say I was very impressed, a very nice dr who was increadibly understanding and took me seriously. Am currently undergoing more tests but he has partly diagnosed me but just wants to get the remaining results back before he makes a firm diagnosis on the lupus.

I was a little nervous about seeing him as I hadn't heard of him, but I really needn't have been. I'd been feeling so unwell for many months and have seen a number of doctors who were, putting it politely, just not interested.

Clara
 

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Discussion Starter #6
hi there thats reasuring about the dr
i think i will go ahead with the appointment
do u mind if i ask you what are your symptoms
what tests you have had
and what did he say
thanks
alex
 

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alexbelfast;509851 said:
hi there thats reasuring about the dr
i think i will go ahead with the appointment
do u mind if i ask you what are your symptoms
what tests you have had
and what did he say
thanks
alex
No problem.

Been feeling 'unwell' (well, downright horrible) for several months including rashes (on the face as well), joint pain, terrible fatigue, hair loss, mouth/nose ulcers, shortness of breath, basically the list was never ending. I also have an underacative thyroid (for which I'm on treatment) plus type 1 diabetic as well as ulcerative colitis so quite a few other auto immune conditions. My thyroid results late last year/early this year came back as extremely low, i.e. it just wasn't working, so they up'ed my meds and my thryoid level is now 'normal' but the symptoms continued, it was only I started to look into things myself and mentioned it to my GP re. possible lupus that things have started to move and on the advice of this great website I booked myself an appointment at the London Lupus Centre.

Had some blood tests 2/3 weeks ago at my GP's which showed all my inflammation markers very elevated plus a rheumatoid marker. When I went to see Dr. Kaul yesterday he tested my eyes for dryness (they are dry) using little strips which he placed under my eyelids, and has carried out even more blood tests and x-rays, and I'm going for an isotope bone scan - the reason being is to rule out inflammatory arthritus, if he rules that out he will treat it as lupus as I have a lot of symptoms of lupus. In the meantime he has diagnosed me with fibromylagia as I have a lot of tender points over my body.

I am so relieved that I'm now being taken seriously, he really was a great doctor :)
 

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Discussion Starter #8
hi thanks he sould like a good dr
my symptoms are
headache
weightloss
really exhausted
jointpain
sickness
mouth ulsers
fast heart rate
missed heart beets
not sleeping well
thirsty all the time
inlarged lymph nodes
and i have a possitive ANA its a low possitive of 80
but my inflamatory markers are normal ]
so i like u want to be take seriously to get this sorted out
are the tests he is doing expensive
my g.p suspected luopus but when i saw the rhumitologist here she said no as i was looking much better
i have not been treated very well at all and like u need to get this sorted out
thaks again
 
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