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Thread: I used to be someone else

  1. #1
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    Default I used to be someone else

    Hi all,

    I've been lurking around here for a while (years), occasionally dropping by to reassure myself that I couldn't possibly have lupus cos, well, it's never lupus. I still don't know that I do but I saw an endocrinologist on Monday and was sent for 22 blood tests including the usual ANA and inflammatory markers etc with the attached clinical note of suspected SLE. Having spent 3 years convincing myself I was being ridiculous it was a shock.

    This might get long, sorry. I need to get this out somewhere I think. I was diagnosed with Reynauds when I was 7. We had no central heating. I was numb a lot (feet & hands). Then I started having gynae probs and was diagnosed with PCOS when 16. I finally have up on the pill at 24 and the mood swings and stuff stopped. My Reynauds quietened at about the same time.

    In 2010 when I was 33 (I think I'm not up to subtraction right now) it all went wrong. I got headaches, then migraines, then 3 migraines a day every day. Tried everything, saw a neurologist, had MRI's, ruled out MS as one of the other symptoms I had was hideously cramping calves and lower forearms. I was then diagnosed with Restless Legs Syndrome and sent to physio for my calves when they meds for the RLS didn't work. At this point I noted spasticity written on my notes. Who knows where they went.

    The neurologist referred me to gynae as my symtpoms were cyclic. As I'd suddenly started having cycles after years and years of none. Was given injections to put me into chemical menopause, the migraines stopped, few other symptoms stopped, so we removed my ovaries. Without doing any bloods. Or checking anything else. Cos we thought since the meds worked, surgical menopause would work.

    It hasn't. Come Easter this year which is when this all kicked off in 2010, I went for a bike ride & ended up have a shivering fit in 25c. Since then I've been broken with some same symptoms I had before the op and some new ones. The fatigue is killing me, I had to come off work cos I had to sit down half way through a shower, I'm photosensitive so I get rashes in the sun, through windows, through clothes including thick jeans. UV lighting makes me itchy. Sun makes me itchy. Everything makes me itchy. I've still got horse bites from 3 months ago that haven't healed. My hair was falling out but that seems to have stopped, and I get drenching sweats during the day when I'm not moving, at night and during any movement. My temp when I'm drenched is 36.3 and when I'm freezing is 37.5. I'm knackered. I'm also brain fogged and feel like I lost 20 points off my IQ. I used to be smart. I used to write for Hewlett Packard and Guardian online, I used to be able to string a sentence together to remember the conversations I'd already had. So I went to the doctor who sent me to endocrinology cos apparently the gynae when signing me off sent a 4 page letter to my doctors telling them to send me there next.

    The endocrinologist listened, looked at the pics I took of my rashes. Asked me if I had sny thoughts on what it was. Boy said thyroid, I said cortisol, cos lupus, well no one actually had that right?

    And that's where I am, waiting for the results of the 22 blood tests and aware the endocrinologist thinks it's lupus. My mum, apparently also thinks it is, but neglected to tell me this til yesterday - apparently that was the reason she was telling me to tell the specialists I had Reynauds. For 2 years. Cheers mum.

    I'm scared, confused, feeling very lonely and isolated and that's why I figured delurking was a good idea. I need somewhere where I don't have to pretend I'm not scared.

  2. #2
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    It is a very long journey, to get a diagnoses, especially when it comes to Lupus.
    You have alot of Lupus symptoms, for sure, but it could also be another AI ( Autoimmune disease). The only thing you can do for now, is to wait for your blood test results.
    If it is Lupus, you will have to find a Rheumatologist, who will find the best treatment for you.
    Don't be scared, if it is Lupus, you will deal with it, just as you are dealing with Raynauds and your gyn issues. We are here for you.
    Even though it is a scary diagnoses, you'll be surprised, how well you will adjust.
    Good luck on your blood test results.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  3. #3
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    Sorry it's rubbish for you. And hugs.

    I'm not sure who I used to be, but I'm certainly not who my head thinks I should be.

    Jx

  4. #4
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    He he he I think I'm just going to wipe the slate clean cos I can't do half the things I used to no matter what it is and that's just the way it is. Best find things I'm good at doing sitting down.

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