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Thread: convinced I have lupus, don't know what to do...

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  1. #1
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    Default convinced I have lupus, don't know what to do...

    Hey guys!

    I'm pretty much convinced I have lupus, although my family seems to disagree with me. At this point, I don't know what else it could be. I was tested for it, but received no word on my ANA, so it was either lost or is probably negative.

    i go to the doctor so much that I feel like I'm wasting his time with my complaints.

    Right now I'm having a "flare up" of whatever this is including:

    -joint pain/swelling in the knees, ankles, toes, wrists and fingers
    -dry skin, especially on the face
    -extreme fatigue
    -pain in my chest (which has been checked out several times and has nothing to do with my heart)
    -low grade-fever

    I was doing a temporary job at a theatre company and had to quit as this week is tech week and i couldn't lift and/or walk around a lot without pain.

    I'm only 23. I'm supposed to go back to school (graduate school) in a week and a half and my parents are suggesting i don't. That's a huge problem because I cannot defer without at least attending for one semester. My class schedule seems easy and I just CANNOT CANNOT stay at home with my parents. i have a lot of issues with them, and at my age, I really need to be away.

    My parents keep telling me to call the doctor, but everytime i go, they just tell me I have a virus. But how can I have a virus 2-3 times a month?!

    Any advice/help is appreciated.

  2. #2
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    Lupus and diseases like it are hard to diagnose, I have been battling with numerous doctors for YEARS (since age 4, now I am 31)

    I am not a doctor so I cannot give you a diagnosis, but it seems to me that you obviously have something going on! I too feel like you do, that I am wasting my time and my doctors time when I go, especially when I get one jerk that is usually on call..he always tells me that its in my head and I am just looking for a pill fix...yeah right, I have taken enough pills in one lifetime maybe enough for two life times.

    Don't give up it takes many many years sometimes to get a proper diagnosis, I finally have a doctor now that believes that there is something wrong and she says she will get to the bottom of it, it kinda helps when I go in and have sores all over my face or hands, or I am just so dang sore I can barely move.

    Don't give up and if you need to seek another doctor to maybe help ya. Trust me after 20 some years of trying to get help, you finally find someone who will help! Just don't give up and be very persistent in your health care, sometimes when you bug a doctor enough, they finally realize that you are not kidding and there is something wrong, I am not sure what I did to finally get a doctor to notice that I wasn't just messing around and that there was really something wrong with me. Maybe my symptoms just got to be so much they couldn't be ignored any longer, or enough of them were present at the same time that something finally clicked on and they noticed..I don't know, but just don't give up!

    Good luck!

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    I agree, keep going to the docs. I keep a journal of what my body goes through. Not a daily one, just keeping track of symptoms, see if they get worse or better or a new one shows up. Doc said it would help him know everything my body goes through, he said it made him more comfortable dx me.
    Like everyone else, it took years. I even quit going for awhile, but went back because I knew something was wrong. I was to young to have so much pain. No one at home believes me either, they think nothings wrong. I told them when dx with FM, they shrugged and said "OK, what-ever". After that when doc said early lupus, I didn't tell. Only me and my doc know, he didn't even tell my hubby. He understands and he'll say nothing unless I say so.

    Don't give up, have patience. Unfortunately a dx takes time. I do understand the frustration of waiting for answers, we all here do. Sometimes that can be the hardest part of going to docs, the sit and wait game. Hang in there, keep us posted. If you feel up to school, go for it. Motivation helps keep us all going, Good Luck.
    Cheryl

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    Hi NY Girl...

    Advice you will read all over the board is you have to take charge of your own health. Do not ask, firmly request tests to be done. Find another doctor who will refer you to a Rheumatologist if your insurance requires a referral. I am fortuante mine doesn't. Also Primary Care Physicians can request the same lab work. Who requests it sometimes determine how much your co-pay will be too. Ask for the tests to be apart of your yearly physical.

    Have you had any of those tests done for Lupus. ANA, CBC, RA Factor..and etc?

    Probably like most of us, we trust the doctors. We feel vulnerable while they talk and probe us in our paper robe....we forget questions, believing they know all and that it just maybe it is all in our heads, causing us to doubt ourselves. But I found out it isn't in our heads. Take someone with you who can be direct and objective. Have your questions written out. Stick to the list. If the time seems short during your appointment, stress to the recepionist you want a appointment to be examed and to also allow enough time to discuss your symptoms and concerns. Most of all let the doctor know it is your body, your health and you want all the test done to determine if you have or rule out, a ..any autoimmune diseases.

    I am sorry you have been going through this roller coaster. It is so unnecessary but most health care providers take a light (cheaper) approach, especially if you are on a PPO or HMO. You need an aggressive approach. Just reading another post on how long it takes to be diagnose, especially if one has an inkling makes me frustrated. I feel your frustration.

    When I was being diagnosed...I had no clue it was Lupus. I thought it was menopause...old age..being 46 I thought wow, life being old can't be like this. I asked menopausal women. So, I treated the perimenopause. I asked family members with arthritis. I treated the arthritis. Basically they said..yep, it sucks getting old, deal with it. It is life, face it you are getting older.. 46 I thought isn't old but I was ready to accept it, wrinkles, graying, aches, pain and all. I thought it was from my three spine surgeries...wondering did they leave an instrument or gauze in me. I didn't push a Lupus diagnose, as I felt it was perimenopause.

    So, for me it wasn't taking forever to be diagnosed...I was looking for treatment for other things and directed my questions towards that type of ailment or natural cause. I even asked kidding like to my husband, are you poisoning me.

    What was the give away was the malar rash when I went to the doctors. It came and went before so I thought it was an allergic reaction..but who knew. When I showed it to my doctors and said I had been bedridden, mentioned do you think it is Lupus? He ordered the tests. Yep, Lupus. Sent me to a Rheumatologist, did another panle of tests to confirm. Yep..so here I am dosing with Plaquenil and other pills. And it wasn't OLD age after all.

    So, girl..it isn't in your head. More than likely not a virus.

    Earlier care is important so demand the best in care and an early diagnose.

    But in the mean time, eat right. Healthy choices. No sugar. No smoking. No Alcohol...Mild exercise. Be kind to your joints. Limit time in the sun. Use sunscreen. Avoid fluorescent lights. Rest. Balance tasks. Hard ones with light ones inbetween. Warm showers. Ensure adaquate Vitamin D. Minimize stress or find ways to release it or control it.

    Don't burn the candle at both ends.

    If returning back to school, can you create a schedule that would allow time off between classes for rest. To eat properly and etc too?

    We all know what you are feeling, emotionally and physically. Hope our suggestions and advice will help you to get proper care, or to help you till you do.

    Be relentless..it is you, you are caring for. Right?

    Be well NY Girl,
    Oluwa

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    Thanks everyone. Just got the ANA back and its negative. I was told "You're fine". I'm definitely sure I am not fine since I am still running a fever and I just had to quit my volunteer work...I'd love to have an answer...

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    Hey NY

    One can have a negative ANA but still have Lupus.

    Saysusie addresses that in many of her posts...check them out. My medical library is limited..

    Be well this night, I ask for you.
    Oluwa

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    Default Convinced I have Lupus

    Have you tried going to an Arthritis Center? I see a Rheume at an Arthritis Center and they are SO understanding with all my symptoms. Never have looked down on me, or thought it was in my head, I feel SO blessed when I read horrible stories like yours. I am SO sorry for you. Just a suggestion. I hope it helps.

    Naw Naw

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    hi,
    as a matter of fact negative ana does not necessarely means not to have sle...but it's rare. The symptoms of lupus are extremely "vague" and can be related to many different illnesses...if your docs think you don't have sle, you could at least want them to find another explanation to your symptoms.
    if you are not fine no one can tell you you are!...something has to be wrong

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