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Thread: I guess I have lupus!

  1. #1
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    Default I guess I have lupus!

    My doctor has diagnosed me with lupus. I still have to find a rheumatologist, but my doc is pretty sure of the diagnosis. On top of a high positive ANA, I have a "butterfly rash" on my face, that I have had on and off since I was 13 (am 33 now). I also have seizures, my liver has enzymes that are high, my kidney's have high creatine levels (my kidney's amost failed at 20 yrs old), my blood pressure is high (has been since 15 years old), my hair is falling out, and we won't even talk about joint pain, or fatigue. I guess the most shocking part of all of this is that I have seen a ton of doctors over the years, and they always dismissed that there was something wrong beyond my symptoms. I went last week to my GYN for a regular checkup, and he noticed the rash on my face, and decided to test for lupus. (I have had 11 miscarriages as well) So, for all these years I have gone untreated, I wonder how much damage has occured because of the lupus. I guess I should be thankful to have a diagnosis, but for some reason, it makes me angry. AND I AM NOT AN ANGRY PERSON. All the rheumatologist that I have called have a 3-6 month waiting list, which is frustrating. Sorry to vent, but I would just like to know how much damage the lupus has done, and what I can expect. I already have seizures a couple of times a month, so is that going to get worse? Anyway, Monday I will make an appointment with a group, and in a few months maybe I can get some answers. I would welcome anyone's point of view in the mean time.

    Amber

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    Default

    Welcome rara,

    I too am a recently diagnosaed member of this forum. I can't really offer a lot of information, but I can tell you that there are wonderful people on here that are incredibly knowledgeable.

    Keep checking the site, they will respond as soon as possible.....lots of pain, fatigue, med side effects, etc. that sometimes interrupt, but you will be amazed at the support that you will receive from this group.

    Good luck to you, and welcome,

    Share a smile today,
    Phyllis

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    Default Hi

    Hi and welcome.

    I too have just been diagnosed so can not offer any help to you. But i am so glad i have found a place where there are people who fully understand this illness. I am finding answers to my questions on here, so i am sure you will find it very helpful too. Hope to chat to you all soon.

    Take care
    Angel.xx

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    Default

    Hi Amber,
    Welcome to the site. My name is Kathy. I have SLE Lupus and have had it for they believe at the very least 44 years. I will be 50 the 17th of this month. Literally for years and years I would go to doctor after doctor only to be dismissed and not listened to at all. I was 36 years old when I got diagnosed and you that was not right of them to do me like that. I nearly died before they finally listened to me and decided that there was something really wrong with me. I thought for a long time about how much damage has been done to me for having to suffer for years without treatment, but you know though it really does not make any difference at all, because it is a case of could have, should have, but did not happen to get diagnosed early in the disease process. Even now after all of theses years with a diagnosis, it still makes me mad that it took them that long to realize that I was definitely sick and to do anything about it. I hope that you get into a good doctor and that they put you on medication.

    I am wondering if you are on any medications like Plaquenil or Prednisone or NSAIDs yet? Please post and keep us up to date. We all care for and about you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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