LUPUS UK

Hello all been awhile

Hello everyone I haven't posted on here in a couple of months just thought I'd pop by and say hello .Reason that I haven't posted is that I was seen at the lupus clinic by rheumatologist her eyes in Northern Ireland a cple of months ago .She seemed pretty certain I didn't have lupus despite me testing positive on antis DNA test .When asked about this she stated that some people in the population just have those positives in the blood ?

I do have reynauds also and three telegantasia on my face which is Apparntly another' reason why I was suspected of having lupus .Chronic heartburn reflux which hasn't got better despite increasing differnt medication and a lot of skin trouble blepharitis ,psoriasis and hair loss etc .

She done afew other referrrals to neurophysiology ,another edonscopy ,wrote to neurologist who has treated me in the past Asking about issues with my legs etc .

I came away with more questions than answers to be honest and completely disillusioned as to what the hell has caused all these new conditions if it's not a connective tissue disease as she stated !

I did not have any of those problems five ten years ago and am at a loss to understand were I turn now !

My reynauds is getting unbearable at this time of year and with me working outside in a job I'm not really physically fit for anymore the cold hands and frozen toes as making it difficult to even walk !Keep getting tingling in feet and have a bit of a pin prick tiny spot on big toe today which is abit painful !

How do those on here with reynauds manage ?

I suppose I don't belong on this forum now but would like to thank some of the people here for their help and support the last few months over the summer and into October when I was expecting to be diagnosed with lupus .I wish you all the very best on this forum there are some great people on here and in particular I want to thank the lovely women who spoke to me on the phone for far too long very kind to have listened and gave me advice and support .

God bless you all and have a lovely Christmas all you people on this forum

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Hi, sorry to hear about the difficulties you are experiencing. It can be so exasperating as you know your own body and you know something isn't right. Hopefully with the further referrals you should get some clarity and the answers you need.

I just joined this yesterday and have already received a lot of support. I don't think for one minute that you will be left feeling that you no longer belong on this forum. Try to stay positive and have a lovely Christmas too 😊

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Hiya carol just so bloody fed up with so many mystery problems and thinking that I was gettin an answer then suddenly passed on to others again !Thanks for the reply

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Will be thinking of you x

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Hello I'm in Northern Ireland aswell and have Sjogrens I remember when I first saw my rheumatologist he said the blood work showed positive for Sjogrens /Lupus and you only have these certain antibodies in your system if you have theses condition maybe you should ask for a second opinion as you already have some overlapping auto immune going on I would ask to be investigated for Lupus and and get the right treatment. Hope you get sorted out its a long wait for referrals to other doctors I was referred for carpal tunnel surgery 2years ago and finally getting it done tomorrow at Musgrave. if you can afford it you could always go to see someone in the Ulster Clinic at Stranmills Road to speed things up.

Hope you get things sorted out its no joke having to live with this.

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Hello thanks for the reply .From what I have been told and read it sounded like testing positive for the antis DNA test was pretty specific to lupus which is why I was expecting to be told that I had lupus .As far as I'm aware I was investigated for lupus as it was a lupus clinic that I was seen at by the rheumatologist at the city hospital in Belfast !

Are there other investigations besides blood tests ?The consultant seemed pretty much head strong on the opinion that i didn't have a connective tissue desease .If I were to go for a second opinion would it be a differnt tehuematolgist maybe ?

The blood test which I had initially was done at a differnt clinic and when repeated it was still a high level for a man of my age apparntly .I was told I'd had every other blood test under the sun done but that anti s DNA test was the only one which was positive .What do you think ?

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Yes you can ask to see a different doctor if your going to see someone at the Ulster Clinic they will give you a list if you call them. Maybe ask your doctor if you can be seen at the Ulster hospital I see Dr McKane and he's very good don't know how long your wait will be though. Hope you get things sorted out soon.

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Hi Ryanmac84,

Please don't feel that you don't belong in this forum. Whether you have lupus or not, you will share many of the same experiences as other members of this community and I hope that you can continue to update us with how you are getting on and help support others in a similar position to you.

We have a blog article about coping with Raynaud's which has lots of tips you may find helpful. You can read it at lupusuk.org.uk/coping-with-...

Anti-dsDNA is a highly specific test for lupus and a strongly positive result is highly suggestive of lupus. Your doctor is correct that there are some people who do not have lupus who are positive for anti-dsDNA antibodies, but this is very rare.

If you are unsatisfied with the diagnosis and treatment plan from your current consultant, you may wish to ask your GP to refer you to another rheumatologist for a second opinion.

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Hi paul.Yes the consultant from the respiratory clinic who ran tests on me because of my other symptoms and problems said that test was specific for lupus .But the reumatologist who I seen at the lupus clinic was dismissive of my positive test .

She wrote to my doctor saying that I did not have connective tissue desease .

It leaves me left wondering were to turn .She did refer me on for differnt tests but these are unrelated to lupus.

At the assessment she mainly just. Looked at my hands and felt them to see i suspect if there may. Be arthritis ?She felt my knees also but that was about it

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Hi Ryanmac84,

Do you know what the other tests she requested are looking for?

Where did you see this consultant? Dr Elisabeth Ball is a lupus specialist based at Musgrave Park Hospital, perhaps you could ask your GP to be referred to her for a second opinion?

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I belive that was the doctor that I seen in the lupus clinic that is who I was referred to and as I said she didn't think that my two positive anti s DNA tests confirmed that I had lupus ?Im grateful for her other referrals but with so many other problem s like reyanuads hair loss stomach problems psoriasis bleparitis pain etc you would think that something must be causing all this coupled with the fact that I had tested positive twice when tested .I belive the number was 25 on one if you know what that means ?

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I'm afraid I'm not medically qualified and therefore couldn't interpret your results. Do you know why she suspects that your symptoms may be caused by something other than a connective tissue disease?

If you're unhappy you could still request a second opinion. Perhaps contact our Northern Ireland Lupus Group and see whether they have any recommendations for good consultants? lupussupportgroupni.co.uk/

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