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Discussion Starter · #1 ·
:(

Just got back from my new rheumy appointment. Her first words were "It's Lupus, isn't it?" I was a bit shocked as I was expecting her to ask all the relevant questions about my previous history. I must have spluttered something as she said "well, it could be" and then proceeded to ask questions about my symptoms.

I was still in a bit of a state as I forgot to mention nose sores, lumps on my scalp, fatigue (how could I forget the fatigue.....), brain fog (that's why I forgot). I even forgot my list of history/symptoms.

She then sent me for an armful of blood tests (lupus panel, ENA, ACL, LA, RF, etc., etc.) and putting "?lupus" on the instructions. She also sent me for xrays of my hands and feet (not had that done before at my old hospital). I blagged a look at my xrays (cited medical interest and my sister being a superintendant radiographer....). I'm no radiologist but they looked normal to me (except for the calcaneal spurs on my heels - no surprise). Isn't it indicative of lupus that if you have joint inflammation you don't have any joint erosion, like in RA or OA? Sure I read somewhere that was the case.

So, no meds yet. I'm going to see my GP on Friday so she might have received a letter from the rheumy by then so we can discuss. Fortunately (or unfortunately for the blood tests) I'm in a little remission at the moment (only a bit of muscle soreness) so I'm not expecting much to show up on the bloods (though do know that you don't have to be in a flare to have something showing.

On the whole I felt confidence in her, probably as much as the last one (he put ?lupus in my notes just before we left Worcestershire).

Can I call myself officially "lupie" now? My husband has called me "loopy" for many years :hehe: .

Hope you are all doing well today. I'm still a bit confuddled but then, aren't I always.......? :wink2:

Love Judi xx
 

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elisabethm
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HI judi that is what i got at my last rhey apointment he said i am not sure you have lupus or not then he said i will do more bloods then sent me for xrays of my hands feet pelvis hips still waiting for the results i will make an appointment for my own doctor and see if he has had any word from him it is so frustrating when one tells you that you have it then you see another rhey and he says i am not sure i was so frustrated with him i put it on a post when i came home but i still have to take the paliquin so what are we suppost to do it is a great site that we can come and get support from all that use the site hope you get the answers from your doc and let us know i will do the same best wishes from elisabeth
 

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Hi Judi,

I'd go with your instinct. That sounds like a pretty good appointment and it sounds as if you are being taken seriously and on the way to a diagnosis and treatment.

I hope it all goes well,
Katharine
 

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That sounds a very good appointment and most promising. Is there a follow up scheduled or will the results be via the GP ?
You are right that SLE mostly doesn't erode the joints: I think the statistic is about 5% thus affected

:)

Clare
 

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Discussion Starter · #5 ·
Hi Folks

Thanks for the replies.

She did seem very positive and for ordering all those blood tests, more than I've had before. I have a follow-up on 31st July but the results will come to the GP before then.

I am "glad" that the xrays appeared normal as I have had such excruciating pain in my ankles over the last few years, I thought RA that was diagnosed way back was to blame. At least in my uneducated opinion I don't have RA.

I hope the GP will be as positive and treat the symptoms when they appear, though I don't want to be on steroids again (ever!).

Have a great evening.

J xx
 

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Hi Judi,

Sounds ok. Hope you're feeling as bit more reassured now. I know what you mean when you say you forgot to say things. I had things written down and I still forgot! So glad you had confidence in your rheumy, makes things so much easier. Hope you continue to be pain-free.

I posted details of my Rheumy apointment on the 'Introduce yourself' thread. You might want to read it. Only just calming down from my day. Aching like crazy now, time for my nightly ibuprofen.

Keep in touch. Let us know what the Doctor says on Friday.

Frances
 

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Hi Judi,

Yes, it does sound like you are on the road to diagnosis and hopefully treatment so that you can soon feel better.

I hope you hear from your GP sooner than later..waiting for results is long and frustrating!

Sharon
 
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