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Thread: Diagnosed Today, Symptoms For At Least 6 Years

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    Default Diagnosed Today, Symptoms For At Least 6 Years

    Good evening! I just found this forum tonight after getting the news today that I have Lupus.

    I have had symptoms since at least 2005 and finally found a doctor last month that would take me seriously and listen to what I was saying. Bloodwork and a 24-hour urine test ruled out an adrenal tumor and showed elevated ANA levels.

    My flare ups seem to start with massive weight gain (40 pounds in 3 months both times) with fluid retention, leading to pitting edema. My blood pressure fluctuates wildly from too low to, at one doctor's visit, 220/188! I have developed a malar rash over my cheeks and nose so that it looks like I'm always sunburned. Last week I developed a discoid rash on my chest in the neckline area. I often have bouts of severe fatigue and intermittent elbow pain. I also experience very frequent heart palpitations.

    I am scheduled for an echocardiogram tomorrow and will be wearing a harness for 24 hours next week to document what is going on with my heart. I have an appointment with a dermatologist next month (soonest I could get in). I am just relieved to finally have a diagnosis and know what I'm dealing with!

    How long do the discoid rashes tend to last? This is rather embarrassing since it's high enough that none of my shirts cover it. It's too warm to wear a turtleneck. LOL
    Last edited by GeoKasher; 07-13-2011 at 03:21 AM.

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    Welcome to WHL GeoKasher. You have found a great group of people to share your (for lack of better words) pain, anger, frustration, etc. This is also a great site to gain information about Lupus that many of our doctors have been in the dark about.
    I have found this group of wonderful people to be non-judgmental. They have had several opportunities to judge my mood swings, craziness, and utter saddness/depression, but instead of judging me, they have comforted me with their kind words of compassion, love and concern. I love this group so much because they KNOW what we go through. They are not guessing or giving their opinions. They actually KNOW WHAT THEY ARE TALKING ABOUT.
    So, GeoKasher, I welcome you to WHL again. (I am from Phila, PA).
    "If you change the way you look at things, the things you look at change" (Wayne Dyer)

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    Welcome to WHL!!
    I can't tell you about your discoid rash, sorry ): I'm not yet diagnosed (besides being told that I have an AI disease), and I don't have any skin involvement. But I do know your relief after finding a diagnosis
    I'm sorry that you have this disease... it's a hard one. But at least you've found us - the people here are great to whine to and get info from, believe me (;
    I'm glad to hear that you're getting everything together with seeing all the right specialists! Do you have a rhuematologist you see as well?
    Doctors can be so...well..stupid sometimes. I went through 4 of them myself, and that's nothing compared to so many others. I'm glad you finally found a good one who listens!
    Welcome again - and i'm sorry I couldn't be of more help with your questions.

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    I also am undx'ed. I have rashes on my hands and inside of forearms. Like you I have had weight gain - 12+ lbs in one year; edema, joint aches and burning. My feet are really involved as well. Feels like my toes are on fire. I have a very light malar rash - if indeed that is what it is.

    Welcome!

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    I am not a dr...but have a lot of experience with a daughterand myself with systemic lupus.....first listen toyour body....second dont panic.....i hope part of your care is seeing a kidney speciaist.....kidneys issues can cause heart issues ....lung issues however......sometimes none of the above are an issue! Lupus affects everyone so differently.....my daughter gains weight in a flare and thats before she is put back on steroids.....rashes last with the flare as far as my experience.....when flare under control it ususally dimineshes......i hesitate to say much because although lupus has certain symtoms it really does vary..... My discoid rash also on my chest has never totally gone away.......to be honest after a while it becomes theleastof my worries....hang in there and be positive.....this disease can be managed

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    Thank you so much for all the replies, everyone. I am still digesting all that I have read so far today about Lupus.

    CWard...Yes, I forgot to mention that I have an appointment with a kidney specialist at the end of next month also.

    Manderson...I am grateful that you mentioned that you also gain weight in a flare. The first time this happened my doctor at that time told me I just needed to quit eating so much. I think it would be impossible to eat so much to gain 40 pounds in 3 months! He never even checked my legs even though I complained of feeling swollen and tight all over. My husband finally went with me and pointed out to him that I had pitting edema. He finally began ordering tests then, but never uncovered anything. It was SO frustrating. I finally gave up and just quit going to the doctor and then must be the flare ended because the weight started coming back off and I felt "normal" again.

    Elo...have not been referred to a rheumatologist, as yet. This doctor is brand new to me and her main concern right now is my heart. My previous doctor never seemed to hear the palpitations, yet this doctor heard them several times during my very first visit. She wants to make sure that damage has not been done since it has been years that this has been going on.

    mrstjscott...Another fellow PA'er! I'm from WAY up north, near the NY state border. In fact, my husband works in NY state and my doctor is over the border there also.

    Thank you all again for your warm welcomes!

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    I wanted to drop in and welcome you to WHL! Although I am sad that you need us I am so glad that we can be here for you. Your story sounds a lot like mine. I gained about 40 lbs in a 3 month period and then the steroids just made it worse. My blood pressure goes up in the 200s as well. Freaks everyone out. The worst part for you is over though. There is a weird kind of relief that comes with having a diagnosis. You feel somewhat vindicated by figuring out that you are NOT nuts!

    Please make yourself at home. THere are wonderful threads with fabulous information. If you have some specific questions feel free to ask! Welcome to the WHL famiy and I look forward to getting to know you!

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    hi and welcome

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    Hello Geo welcome to WHL I know you will find answers & validation here.

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    Hello, And welcome to Whl! Im so glad you have joined.
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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