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Thread: When does it become serious?

  1. #1
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    Default When does it become serious?

    I'm still waiting for my appointment with the rheumy. I called yesterday and got on the cancellation list so hopefully I'll be able to get in sooner, but my appointment isn't until mid-September. In the meantime I'm in the worst flare I've ever had. I seem to be getting worse as time goes by. Currently I'm not on any meds for Lupus, just Advil as needed, and Vicodin as needed for the dozen kidney stones I'm harboring. I am supposed to take vitamin d as well, but stopped until I get the stone formation under control. (also on zoloft but that is unrelated)

    So as I seem to get new symptoms by the day, and realizing I will be living with this for another month and a half while my immune system is allowed to run rampant, I wonder when is it too much? My list of symptoms is 40+. The fatigue, joint pain, etc is miserable, but I can manage and know that it's not life threatening. But, the bruising, white numb toes, petichiae, vascular pain, headaches, chest pain, kidney issues, etc, etc, are frightening. And I'm a bit scared thinking that these things are just going to be continuing until my appointment with the rheumy.

    So what symptoms do I need to really worry about. And what do I do about them? I've been to the ER with chest pain and shortness of breath and they said it was just inflammation. Well yes, no kidding. But how about something to stop it?!?!

    (btw, I do not have a diagnosis yet, but have most symptoms. Butterfly rash, photo-sensitivity, joint pain, fatigue, hair loss, protein in urine off and on, sores in mouth and nose, possible vasculitis, new reaction to Bactrim, etc, etc)

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    Your question is a tough one. Any time you have issues with your organs (heart, lungs, etc) you should do just what you are have been doing and go to the ER. Sadly Lupus and the majority of AI disease can take a long time to diagnose. For some it is weeks but for many it can be months or years and that is after the initial appointment. The problem is that almost every Lupus symptom can also be a symptom of something else and since there is no actual test for Lupus they have to rule out everything else first. Sometimes we get lucky and the first doctor we see starts the meds that can help but even then it is usually many months before the doctors find the right doses of meds to work on our individual flare.

    Also, many times the appointments with the specialists can take 3 or 4 months to get so actually Sept. isn't all that bad. It is always a good idea to get on the cancellation list though. It usually speeds things up.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    ... and don't forget to write all the symptoms down on paper, and don't forget to take that particular piece of paper(s) with you to the doctor's office... like someone else I know did... tic
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Ok I have to ask... What does "tic" mean? I know it is a for
    Of a laugh, chuckle, lol or something but what does it stand for? I always wonder
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    TIC = Tongue In Cheek (but don't bite it accidentally... tic) - I may have mangled it, which I'm known to do, but I *think* that's what it is. I come by word-mangling honestly from my dad. He calls "Volleyball" "valleyball", and other things like that. aka: George-isms... I always mess-up the "rolling on the floor laughing", "laugh out loud", etc. stuff OMG!!! Now I sound like a volley girl... |;^) - and that emoticon guy has a "uni-brow"...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Quote Originally Posted by jmail View Post
    TIC = Tongue In Cheek (but don't bite it accidentally... tic) - I may have mangled it, which I'm known to do, but I *think* that's what it is. I come by word-mangling honestly from my dad. He calls "Volleyball" "valleyball", and other things like that. aka: George-isms... I always mess-up the "rolling on the floor laughing", "laugh out loud", etc. stuff OMG!!! Now I sound like a volley girl... |;^) - and that emoticon guy has a "uni-brow"...
    Jmail - you are a treasure!
    I always pictured the "tic" as being a sort of facial or body tic, and it was funny that way too.
    Hugs,
    Marla

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    Thanks Marla. I'm in town 'til Wednesday, unless the coppers find me first! Oops, that's today!
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    You know there are times when symptoms come on so quick and just make our lives miserable. I have an internist who I also see along with the rheumatologist. When I am waiting to see the rheumatologist I will see my internest and family doctor if I am having issues that are making me miserable. They have been great in getting me through to the main appointment. For example......my joints are swollen and I am having lung issues so he prescribed prednisone to help with the flare until my rheumatologist appointment. If you can make an appointment with someone like that I would. Also, let them know when you are going to see the rheumatologist when you are in. This has been my saving grace through all of this!!!!!
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    You crack me up!
    Graves Disease 2007, Ceilac's Disease 2008, Lupus 2012.
    "Не дай мне Бог сойти с ума."
    God, please don't blow my mind. - Aleksandr Pushkin

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