Rheumatology appointment in January: Hi all, it's... - LUPUS UK

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Rheumatology appointment in January

JaxPow
JaxPow

Hi all, it's my first post, I'm hoping I can get some thoughts from you...

I first went to my GP about my aches and pains 7 years ago, they tested for rheumatoid arthritis but it came up negative. I was then sent to see a rheumatologist for a possible lupus diagnosis but they decided it wasn't. I was then fobbed off for a while by various GP's....its osteo, we will eventually replace your knee joints.....you live in manchester - get used to it and take vitamin D....eventually my latest GP wants to query Lupus again as he did a dsDNA test and it came up abnormal. I now have an appointment with a different rheumatologist at the end of January.

I've written a list of symptoms to take with me, I was wondering if anyone could offer me any word of advice for that first appointment.

•Positive ANA and abnormal dsDNA. I have the Lupus Anticoagulant – I see a haematologist annually

•Pains in finger and toe joints, the back of my hands and tops of my feet/ankles puff up. Shoes feel tight and my rings get tight. I’ve had some sharp pain in feet like pins sticking in them. Also some shooting pains in my hands and wrists

•My knees hurt, especially when climbing stairs and driving. My knees also get red and hot

•Muscle aches, I sometimes feel like I have been exercising or have a virus that’s affecting all my big muscles.

•I struggle to get out of bed and up from a chair as I stiffen up.

•I often sleep really badly as I wake up in pain every hour or so and have to change position.

•I feel extremely tired all the time and have had to take naps during the day, even if I have slept well.

•I have dry eyes, if my eyes water for some reason (crying, onions or wind) they start to sting really badly, making them water more!!

•I get a red flush across my nose, cheeks and chest. It’s very red and hot, feels like my skin is burning. Often gets commented on by people.

•Regular headaches

•I suffer from depression; I came off anti-depressants in the summer.

•My dad has rheumatoid arthritis, my sister has pulmonary sarcoidosis

What do you think....are they going to fob me off again?

3 Replies
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Welcome JaxPow

Sounds like you have a pretty good handle on this, and your rheumy certainly shouldn't be fobbing you off at this stage. As you know, positive ANA is an indication of autoimmune activity but is not necessarily diagnostic. ds-DNA is saoid to be highly specific to lupus/SLE, but even so, on it own and at low titres it may not be sufficient for a lupus diagnosis.

For you rheumy appmt, do take some records to show how your symptoms persist or flare - a symptom diary of some kind - plus photos of any rashes etc, especially if they are liable to come and go. The LUK leaflet on symptoms and siagnosis might help understand what your rheumy will be most interested in. lupusuk.org.uk/wp-content/u...

Do let us know how you get on x

I do not think they were ever fobbing you off. It sounds to me like they were suspicious of an autoimmune disease but your initial labs were not indicating it at the time. You did have the lupus anti-coagulant. That alone was likely causing your doctors to be watching you. That is why he ran the DNA test again. Seven years is a long time to go without a diagnosis but, in your case, your disease had not evolved in a way to allow them to diagnose or treat. Your symptoms and labs have changed so that they may be able to get a handle on it. I really hope you get answers.

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I think that, if they fail to express their suspicions and discharge you then that is fobbing off in my book! I was previously diagnosed with RA and treated aggressively for it with 4 different DMARDs. Then it morphed into MS-like disease and finally I ended up getting rediagnosed with seronegative Sjögren’s by a very positive lip biopsy. It’s been a long journey which is ongoing unfortunately - as they know so little about Sjögren’s compared to the others.

But if your dsdANA is positive then this looks more hopeful where it comes to getting diagnosed with Lupus - and most importantly - treated🤞🏽

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