WHAT HAPPENS NEXT

so friday after my rhumy appointment i got told i have Sle lupus but my doctor was a waist of time she spent most of the time looking at her pc and not talking to me she , told me that they have lost most of the blood that i had taken last time so i had to have the done again. when i was leaving i asked her was it lupus and she said "oh yes so i will see you next time in 3 months time". So i am still confused i had some qusetions to ask her but she did not really give me any time to ask her ... Went to work then so upset . my Qustion is what will happen now that its be confirmed ?

5 Replies

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  • Hi there

    Sorry to hear your appointment was so difficult, especially when you received your diagnosis. Did the rheumatologist start you on any treatment?

    When I was first diagnosed I got the rheumatologist to send me a copy of the letters she sent to my GP. You could ask your GP for copies of any letters (they might take a few weeks to arrive there). I found these letters helpful as the explained the consultants thought process, from results of investigations, my symptoms, leading to her diagnosis and treatment options.

    Is there a rheumy nurse at the hospital you can contact if you have any questions? My hospital doesn't have one, but I know in some areas patients have that useful link.

    For me, after diagnosis, as well as getting used to taking tablets every day, it took a while to get my head around having a chronic illness. It took about a year for me to feel truly well, but these days I'm pretty good. I do give lupus a healthy respect and rest when my body needs it, and I've had to make adjustments, such as no longer running or doing triathlon, but for me, life is good.

    I hope, now that you have a diagnosis, you can get the right treatment and start to feel better. I'd say that you're in charge of your health - don't be afraid to ask questions here, of your GP or rheumatologist. Knowledge is power!

    Take care and be well

  • Thanks for the reply .. my Dr put me on Hydrocloriquine about 3 months ago but told me to drop the dose to 1 a day as my mood swings are a bit crazy at the mo put if my moods swings dont get any better then put the med back up if i feel he need to

  • You might have to wait for your next appointment,Take notes with you,and ask do you mind looking at me while you are taking to me.You are the most important person sat there,and you deserve to be treated much better.

    I the mean while read all you can about Lupus(UK only) perhaps give Lupus U/K a ring and they will send you leaflets and ask is there a Lupus Group in your area,and if you can why not join Lupus UK.

    All the best remember,you are important.

  • The medication you have been given is well prescribed for Lupus patients and can be very good if they agree with you.

    I always take a list in with me to the GP as I would often leave with unanswered questions or even some of my ailments untreated as I felt I had to many to remember!

    You have to be strong with them and dont leave until you have the ansers you need!

  • Hi, I'm a great advocate of changing consultants if you get one that does not listen to you or treat you with respect and as an individual. Earlier this year I had three consultations with a chest consultant at my local hospital to be told on my last visit that there was nothing wrong with me that losing weight woudn't cure and I was to go away and eat less bread and more celery!!!!! I hotfooted it to my GP and told him I would not go back and wanted to see someone else - having previously looked up different hospitals in my area I told him which hospital I wanted to be referred to. I have just had my first consultation with my new hospital to be told I now only have 65% lung capacity and I have intertitial lung disease (brought on by the lupus) - not sure how losing weight will cure that one but then I'm not a consultant on 75K plus a year!

    If you don't get on with your rheumatologist then change her! Take care of yourself,

    Angela xx

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