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Thread: 2yrs still no answer

  1. #1
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    Default 2yrs still no answer

    It's been a while since I've been on here and since my last post I got a rheumatologist appt. For 2012 ..but at least that means the doc sees something in my chart worth seeing me. About 4 or 5 months ago my bloodwork showed significant anemia and still high cholesterol. I've been gluten free for a couple of weeks and ive seen it help with some of the swelling and pain, but now that I haven't been on my anti inflammatory for a week (no health coverage) I've noticed my feet just kill me..it's worse in the AM but I can still feel it in my toes and ball of my foot later in the work day. I have also noticed the sun makes everything (swelling pain fatigue ) so much worse...which I didn't really connect before.
    If I'm in the sun my fingers puff up I get so itchy and the last couple of times I've broken out in a rash on my neck and legs. My legs also get really swollen and heavy and this could be from thirty minutes of sun exposure. Does this sound lupus like? Should i write this down and take it to a doctor ...I've recently moved so I haven't found a doc here yet. I have had three docs tell me they think it's lupus..?
    One last thing..my bf and I went to the beach one day and I just wanted to tan so bad so I laid out in the sun and I couldn't get out of bed for the next two days. I'd get up and have to lay down for a nap within half an hour..
    Thanks so much for reading and any suggestions you have.

    So far I feel like the triggers for a really bad duration of symptoms are the sun, stress, and gluten.

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    the problems you list, could be from lupus.

    the problem with auto immune disorders, is that the symptoms for many different disorders are the same.

    what i mean is that one symptom, can be listed in mre than one disorder.
    a good example of that is fatigue.
    fatigue is a symptom of over 1/2 of the 63 listed disorders.

    swelling is also a common complaint.

    if it was me....
    i would list all of my symptoms, related or not.
    and talk to a doctor.

    waiting till 2012 does seam quite a long wait.
    ask you new doctor if he can reccommend a rhuemy.

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    Ok thanks. Yes 2012 is a long wait especially when you've already been waiting nearly 2 years for some definitive answers not just a probable diagnosis!

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    And how much damage gets done while we rabbit around from doctor to doctor or wait months for an appt?

    Bench - I've been having problems with the sun as well. Yes, do write it in a symptom journal and show the doc when you get in to see him/her.

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    You're so right. I can't stand the doc to doc thing anymore. Thanks for your advice I will do just that

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Bench View Post
    I have also noticed the sun makes everything (swelling pain fatigue ) so much worse...which I didn't really connect before.
    If I'm in the sun my fingers puff up I get so itchy and the last couple of times I've broken out in a rash on my neck and legs. My legs also get really swollen and heavy and this could be from thirty minutes of sun exposure. Does this sound lupus like?
    You just described almost word for word what happens to me after sun exposure. I was dignosed with SLE in 2004. What you are experiencing most certainly sounds Lupus like, but as Steve mentioned, these symptoms could be caused by any number of autoimmune disorders, or even from something not autoimmune related at all.

    As far as triggers go, for me stress and UV radiation are two sure fire ways to trigger a flare. I would imagine that most people here have those two triggers at the top of the list.

    I hope you can get some answers sooner than later. Being in diagnostic limbo sucks.

    Rob

    PS-Welcome Back!
    Last edited by rob; 09-04-2011 at 11:58 AM.

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