good news (technically)

had some great news and I wanted to share with everyone, well its not great really but fellow lupies will understand why it is! After nearly 2 years of being prodded, poked, pumped with potions, pills, xray's, MRI's, ct scans and god knows what else I finally have a confirmed diagnosis of systemic lupus!! iv been suffering with symptoms for as long as I remember starting with pains in my fingers and knees, then as a teen awful migraines where I would want to bray my head on the wall to knock myself out. things got worse and worse until I started having recurrent miscarriages and then finally the pains in my bones got so bad I couldn't walk around anymore and was sleeping nearly all day and night. the doctors have ummed and arrred and now iv had it confirmed!!! just thought I would share the great-ish news !!!

loubie love to all

9 Replies

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  • great news! im at that stage (not diagnosed yet as previously symptoms not accepted by gp/rheumy)but finding it more painful to walk my dogs and wanting/needing to sleep more.i hope to get a diagnosis when I see my rheumy next week armed with photos of face and neck.

  • So have you been started on a treatment now with the diagnosis? Not that you wanted to have lupus but the point of diagnosis is to get to treatment asap. I hope you're now ' on the books' and being taken care of by your consultants.

  • Hi Loubielou

    Well done for getting a diagnosis. I hope you soon feel better if treatment has been started?. It can be a bittersweet emotional time! Take Care X

  • Hi, Loubielou - congratulations on getting the diagnosis! And you're absolutely right about the importance of the label; my friends didn't understand why I cheered when the rheumy confirmed my SLE - but we do, and we're right behind you as you start on your journey towards proper, effective treatment.

  • its just such a relief to have a confirmed diagnosis, iv spent so long wondering if they were going to treat me symptomatically forever! im going to be starting oral steroids and some other things to help control the pains in my joints, since the steroid injection worked on my pain levels she finally admitted that the pain is probably being caused by the lupus and not by the arthritis. im still waiting on the typical blood work to come back but then ill get another appointment to see the nurse and ill be started on everything I need to hopefully get some kind of normality back to my life.

    xxx

  • Fantastic news Loubie, I know just what you mean and what a sense of relief it is when you get a diagnosis at long last. You know that after all this time you are not going round the bend and imagining things. I raise my errrr...... cuppa to you. ;-)

    Madmagz x

  • Oh boy I recognise what you are saying. Chronic TMJ pain that started 3 years ago followed years of GPs adding pills and potions to my routine to cope with various issues (anaemia, fatigue, swollen joints, Raynauds and chilblains, warfarin hypothyroid, low calcium and so on and so on) I FINALLY have a GP taking a holistic view and am gaining a small medical team for support. Next week I am seeing my urologist and neurologist and I am awaiting appointments with a nephrologist and a rheumatologist. I now take in the region of 20 pills a day before pain relief. I am glad that at long last I have a new GP who is tying all the evidence together for me and the relief is incredible.

  • I have horrible reddish purple blotches an the tops of my forearm too. They don't hurt, they just really ugly and stay for a long time. I get terrible migraines as well. I keep the dark and blocked all light from the windows. I have not gotten any help with my meds.

  • You've just gotta keep pushing for answers and don't give up guys :) xxx

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