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Finally diagnosed after 8 years

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  • #16
    Hi Lottie,
    It feels strange to congratulate someone for being diagnosed with lupus, but the path to diagnosis is sometimes so long that the relief that you have an answer is just the most amazing feeling :hehe:

    So congratulations on finding a dr with some sense, and congratulations on becoming a lupie
    I hope that your meds start to kick in soon
    Take care
    Elle x


    • #17
      This is such a common story! The delayed dx - so here is my question, since I seem to be in the 'delay' period - during the undiagnosed period for you guys did the diseasse remiss, get worse or stay about the same?

      My ANA is positive and a positive dsdna to go with it, but mild symptoms - some swelling of the joints in hand and feet, a few mouth sores that don't hurt, low fever (99.8 ), dry eyes. Super fatigue. Super fatigue.

      Rhumy didn't want to diagnose me, she said (it's true on that day) my swelling wasn't obvious to her and "anybody can come in here telling me they have symptoms" I don't even know where she is coming from on that - I'm lying to her??? the more I review that in my head the more it bothers me.

      So tell me - should I just be patient? Is the treatment so bad that they don't want to treat you until you beg for it? If it take sthe next five years to get dx what will be happening to my body during this period? should I seek another opinion? What was the five years like for you guys that had a delay in dx?

      oh, I get a rash in the sun too - agian meaningless to the Dr because I didn't have it the day she saw me.

      Lottie -
      I sure hope the plaq will make a big improvment for you soon & I'm glad that you have the peace of mind for whre you stand and what treatment should be pursued. This is the benefit to a diagnosis.


      • #18
        hey guys, sorry I havent been on here for a while.

        I've got a stinking cold at the mo and it's really taken it out of me. I apologise for the bad grammar, :lol: brain fog city today!

        It's so interesting to read other peoples posts. I often feel so isolated with this illness but I do take great comfort in the fact that i'm not alone when I come on here and read through the posts I would love to be able to meet up with other lupies. I haven't found any kind of support group in my area. I live in West Sussex. I wonder if any of you live nearby?

        Karen B, I totally sympathise with what you are going through! It sounds very much like my story. Seems like you don't have the best Rheumy in the world. I really think it's down to each individual dr/consultant. My first one I saw wanted to put me on meds and dx connective tissue disease, the 2nd was such a negative experience i lost all faith after being told it was all in my head! but 3rd time lucky now. He dx sle even though my blood test results were not as strong as they were 3 years ago. If I were you Karen B I would definately get a 2nd opinion! I just wish I had done so after my bad experience.
        After this happend I just thought that i'll have to get on with this on my own. I tried lots of holistic therpaies to try and help me. The best one was accupuncture which was a godsend but when my rashes were getting worse I new that this wasn't just cfs and something just told me to 'not let this go'.

        It makes me sad and angry when so many of us have to go through the hardship of finding a good dr that will actually listen and help us. I think you need to keeping going until you finally find one that is going do this. It may take time but it will be worth it in the end.

        I have started the hydroxychloraquine but I have been having problems with it will do a separate post about that.

        Thanks again for your lovely kind replies. xx


        • #19
          I'm in East Sussex Lottie, over in brighton.

          I am also just starting the plaq or pleq lol, can't remember what it is.

          Karen B, don't worry too much about delayed diagnosis. if anything more terible than usual is going on you will be aware. I will say over 10yrs my symptoms have become more clearly those of Lupus, so if anything the mists clear but the pain and exhaustion is awful and we shouldn't have to go through it all alone. I remember telling specialists I was not swallowing spoons lol, so it isn't Munchousens:lol:
          . I spoke to my GP yesterday who seemed totally gobsmacked when I told him I have a diagnosis of ICTD. I had asked him for years and years to treat my symptoms and finally instructed him it was lupus lol and asked him to find it. A year later I begged him to let me go to a Rheumy. I had to pull a swifty to get to the London Lupus unit....How we cope with all this I do not know....

          Will go look for your poston the plaq Lottie xxP