LUPUS UK
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First Visit to Rheumatology.

Hi all,

I paid my first visit to an abrupt and rather jobsworth Rheumatologist today, who was less than impressed with my symptoms and my blood test results ( despite the fact that they were all positive, albeit at a low level) She chose to ignore my complaints of migraine, allergies joint pain and a facial rash, put the fatigue from which I suffer down to an underactive thyroid ( I do have an underactive thyroid, btw ,and it is ridiculously out of control because my GP is as useful as a chocolate teapot! I'm tired of constantly reminding to arrange blood tests and titrate my dose of levothyroxine, only to have it fall on deaf ears ,so I will accede this, though I am convinced its not the whole picture) and was basically of a mind set of 'don't call us, we'll call you ( if EVER)'

To be fair, she did reorder all previous blood and urine tests, as well as some x rays of my hips and knees ( which give me the most discomfort), and while she may in all honesty be right, I felt as if I were a mild annoyance that should be swept under the carpet. I don't suppose I could ask for anything further in this regard, but I am confused, for a couple of reasons:

-If only a very few people have dsdna antibodies ( and mine are within a normal range) can they simply be dismissed as 'just one of those things'?

- My ENA panel was positive, but no one seems to know what antibody I tested positive for. Would this be Thyroid Antibodies, or something else?

Anyway ,just for the avoidance of doubt, a binding level of 2, is, apparently, entirely normal.

Feeling a bit confused and disheartened,

Bette :(

17 Replies
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Bette

Join the club/band/rant/unheard

You are most welcome. We all share your confusion, dismay and gobsmackeredness! You are not alone. This is, unfortunately, a very common post on here, sadly. Be prepared for a road of bumps and dead ends, which, with perseverance, may lead to a happy destination.

My distillation of all the advice I have read/heard/practiced? Find your local Lupus Specialist, request/state to your GP your need to see them and go see them for a more thorough assessment. Lupus UK have a list of these doctors. Email them with your address and they will look up an accredited specialist near you. It may take six weeks to get there but be ready with your list of questions, your points of confusion and by taking someone with you, you should be heard. Take notes too or record your session.

By the way. Did you go alone today? Hm thought as much. The answering of questions in the presence of (sadly often male) witnesses become so much more convivial and precise. I would now make it a rule, if going to see any doctor, take a witness, pref male. Sigh, even in the 21st Century.

Good luck with your search. Happy landings

Welcome Bette, anytime.

You are not alone

⚽️

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Footygirl, the way you describe our struggles with healthcare makes me laugh 😂

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You made me laugh so much :) :) :)

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Hi Footygirl,

Thank you so much for your reply :) I've just done as you suggested and emailed Lupus UK to see if they can help find a (sympathetic) local lupus specialist.

For what its worth, I did go accompanied, but had something of a sinking feeling when I realised my consultant was female; I knew almost straightaway that she would not be open to discussion. Her physical exam was cursory, and she had no interest in listening to my explanation of all my other symptoms. Everything as far as she was concerned was utterly normal and due to old age/creaking joints/a dodgy thyroid.

The more I think about it the more cross I get. She only seemed interested in reducing the number of people she had to see rather than finding out what was actually wrong with them.

Bette:(

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Hi BettyJ just to agree with what the others are saying - you are not alone but one of a growing club, Rhumies are indeed little jobsworths who enjoy getting their kicks by looking down on and feeling superior to us mere mortals. Just relax grit your teeth and as Footygirl said take a witness in with you. We have all been there prison would be easier on the stress levels.

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Thanks Jan - many thanks for your kind reply. You're quite right- a prison sentence would be easier to endure!!

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Welcome, and yes, this happens a lot I'm afraid. Footy puts it beautifully, and is absolutely correct about having a male to accompany you. Sad, but true - even my 23 yr old who is constantly asked for proof of his age - worked wonders for me.

There's one small hope, though. Rheumy's get more interested after they've done lots of tests for themselves. Mine did, but I'm afraid that doesn't speed up whatever time zone they occupy.

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Hi Lupiknits - thanks for the welcome! :) The Rheumie I saw yesterday did repeat all my blood tests, but somehow I am not convinced that she'll be convinced, so I think I will look for a specialist that might be a bit more sympathetic and have some answers.

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Yup - one of the first things I say to people struggling with doctors is take someone with you. And obviously, once we look a bit older as females it gets worse. It shouldn't but it does. My worst experiences have been with middle-aged females and gentlemen of eastern provenance - to think I once went to med school...

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Hi PMRpro- I did take someone with me ( my mum) but the rheumy was not at all interested in engaging with anyone, especially me. Rather, she seemed more interested in waging war on her diary.......

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Well done on taking someone Bettie. All too familiar these jobsworth docs. I think it would be more appropriate if they were covered in feathers, had a long beak and begged for bread at the local pond and were called by the sound they made!

It seems to me that someone did eeny meeny miney mo when looking who to dump us on and Rheumies have resented it, and us ever since.

Glad you are seeking more informed, and hopefully more inquisitive help. Do let us know how you get on.

Love

⚽️

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Bettiej,

I'm in the club too, I got to the point that my rheumatologist was making me sick and each time his name was mentioned I felt like crying.

Strangely he was the one who diagnosed my lupus, and when my husband ask what the diagnosis would mean for me, and how he could help, he was told to go away and look on the Internet!

Anyway I eventually switched to the local specialist, and we now work together on fighting this beast.

Please remember that you have every right to fair, respectful, appropriate treatment.

It's not us, it's them!

Good luck with your future treatment

🍀 🍀 🍀

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Hi Creaky,

Many thanks for your reply. Sorry I haven't responded sooner - I have MS and Hashimoto's ( on top of everything else), and both have been behaving rather badly over the last couple of weeks! :( (grrrr).

I am very glad to see that you managed to get yourself sorted out with a specialist who knows what he/she is talking about. I sometimes wonder if the rest of medicine actually believe that lupus exists as a condition because it seems to utterly dismissive of our perfectly legitimate complaints!

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I was very nearly fobbed off yet again by my rheumy. joint and muscle pain for over 30 years, must have swallowed millions of NSAID's and Gabapentin, endured steroid injections into my spine (this is because I also have a spondylolithesis). Finally GP after testing me for RA for several years admitted defeat and said he was not sure what I had so got me a referral.

(GP has recently told me to stop the NSAID and Gabapentin as they were obviously not working)

Rheumy started on the usual claptrap of its your age get used to it - I am not even 50 yet!

however suddenly got interested when I mentioned I was having my 5th attach of Iritis. She decided it was probably Psoriatic arthritis so nuclear bone scan ordered and blood tests.

Bone scan was fine - ANA negative but I tested positive for lupus antibodies.

So I have Lupus - the only drug I was prescribed is Aspirin. Next appointment in 6 months.

So basically yes I have Lupus but that is it - Obviously nobody is that worried about me as I assume I would at least get an appointment earlier than 6 months. That's fine then dont worry about my aches and pains.

Dont know if I can be bothered with it all - I may just as well not bother going to see any Health professional and just learn to live with it - should be used to it after all these years

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Hi Lupus 01,

I am so sorry to read of the indifference of your doctors to your condition, despite diagnosis. Why on earth must they ALWAYS put everything down to age/creaking joints/diet and lifestyle?! You must be soo incredibly frustrated!!

I think you should be bothered about your condition and not discouraged by your treatment at the hands of your docs, not just because they aren't worried, but because you should treat yourself kindly, and in the best way you possibly can.

Arm yourself with a list of questions for your next appointment and don't let the rheumatologist fob you off the way mine is currently doing ( not that she is going to get away with it after the latest episode!!) Keep a symptom diary, and show it to him/her - sometimes if they have written evidence in front of them they are more convinced by that than the words that come out of your mouth!!! ( strange, but true!)

I hope you are feeling well at this moment in time, or at least as well as can be expected!

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Lupus_01

Please read the following sites re:

Hughes Syndrome/APS/Antiphospholipid/"sticky blood"

hughes-syndrome.org

healthunlocked.com/hughes-s...

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Jus the once, it would be really nice if the left hand actually knew what the right hand was up to regarding this diagnosis malarkey ( I would say farce, but I'm not quite there yet!).

After drawing shedloads of blood for Anti phospholipid syndrome- which seemed a complete waste of time and money given that I've never had clotting problems in my life- (though I do understand the need to rule it out given that it is a condition that can be confused with MS, it would have been better if the Rheumatologist had actually asked me about it instead of making assumptions) the one blood test that may just clinch a diagnosis - ENA -has not been conducted by the lab because the sample has been lost by them not once, not twice, but a truly staggering FOUR times!!!! I've just come back from the hospital where I've had it drawn for the FIFTH time.

Do you think I should have arranged for a security guard to accompany it on this occasion?

Still hanging on for answers.

B :( x

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