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Thread: no one thinks I have a problem...I think I have lupus. new member

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    Default no one thinks I have a problem...I think I have lupus. new member

    Hi there. Im hoping the community here can help me as im at a loss of where to go from here. Im having health problems that have been subtle for years but drastic just recently. Someone suggested lupus...and so here I am. Im young..26, but feel 65. Im looking for answers and not finding anything straightforward. ?..so im hoping this community can help me decode what is going on.

    Ill start by saying my grandpa on my maternal side had lupus. He was diagnosed in his twenties. He died in his 60s from complications. This was almost 30 years ago, when lupus was not very well treated.

    I have always been fragile. I get sick easy, tired in the mornings, tired In the evenings. I get super sore from any amount of working out. I used to get shortnof breath during excersize, but now all the time constantly as of two months ago. I get alot of sore throats, and I cant eat greasy food without getting nauseous. I have intermittent back flank pain on my right side, and sometimes heart palpitations. My chest always feels heavy now. I used fo get super sore joints in the winter, but its better now. I also got super sore joints from taking birth controk pills, so I had to stop. I also have abnormal menstrual cycles, and I feel very moody all the time. Also, just now I noticed when i go In the direct sun, my legs get blotchy red and white in between my blue veins In my thighs, and it goes away when im not in the sun. When im also in direct sun, my asthma or breathing trouble gets really bad until I go in the shade or inside. I feel weak all the time. I feel like I cant keep up with my two year okd without becoming exhausted. I cannot build muscle, and I am constantly at 18 bmi and 95 lb no matter what I eat...accept when I was pregnant I gained and lost 40 lb.

    Ive seeen a cardiologist and he tells me my heart looks ok. (24! Hr monitor, echocardiogram, and a battery of blood tests for lipid lanel, glucose, cbc, d dimer, kidney function, ect. The only thing elevated was my AST enzymes were 50 on a scale of 12 to 35.) They told me not to worry. He also did standard thyroid tests but my tsh was at 5.1 on scale of .3 to 4.5, my t3 uptake was 35 on scale of 12 to 35, and my other levels were in the low to mid range of their scale so they told me I didnt need to be treated. They said high uptake signals hyperthyroid, but high tsh signals hyperthyroid, so I dont know whats going on there now. Im seing a new doctor tuesday.

    The e.r. did another battery of tests when I went in for shortness of breath, and gave me the all clear with a chest xray and anothef battery of tests with o2 monitoring and ekg. They suggested allergies, gave me an albuterol inhaler, singulair, zyrtech, prednisone, and larazapam. I am currently only using the inhaler as needed because I dont like to take things unkess I know whats wrong for sure.
    The inhaler works temporary, only for about 2 hours or so, and makes me phlegmy.

    Does anyone else go through thihs where the doctors think your crazy? What should I ask the doctor to test on tuesday.

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    Hey! Getting a diagnoses can be so stressful, overwhelming, and frustrating! A few doctors told me I was crazy some even dismissed me and told me to go to another doctor cause they didn't want to deal with me. Some of your symptoms sounds like Lupus. Check out the Lupus foundation of America they have some helpful stuff and list all the symptoms, so does webmd. sometimes lupus doesn't show up in the blood work if you aren't flaring. You only need 4 symptoms to get diagnosed and treated keep that in mind. I would suggest joining a facebook support group. Those have really helped me. The world according to lupus is a page you can like on facebook: it has lots of great information, humor, and inspirational things. No matter what don't give up!!! You are NOT crazy. You WILL get answers. It will be okay.

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    Quote Originally Posted by Riaheart View Post
    Hey! Getting a diagnoses can be so stressful, overwhelming, and frustrating! A few doctors told me I was crazy some even dismissed me and told me to go to another doctor cause they didn't want to deal with me. Some of your symptoms sounds like Lupus. Check out the Lupus foundation of America they have some helpful stuff and list all the symptoms, so does webmd. sometimes lupus doesn't show up in the blood work if you aren't flaring. You only need 4 symptoms to get diagnosed and treated keep that in mind. I would suggest joining a facebook support group. Those have really helped me. The world according to lupus is a page you can like on facebook: it has lots of great information, humor, and inspirational things. No matter what don't give up!!! You are NOT crazy. You WILL get answers. It will be okay.
    Thank you. The biggest problem for me right now is the shortness of breath. I literally feel like im half suffocating. I can deal with the other symptoms but I feel like ill never breath normally again. ..Im starting to get down about it because they dont even think there is anything wrong with me. I need them to do a mri of my lungs or something to be sure they arent missing something or...i dont know. I see a doctor from a university near chicago on tuesday, but tuesday seems so much far away especially because I know it will take even longer after that to rule out more things. Is shortness of breath a lupus thing? Is there a lupus problem with the lungs that I could focus on? I dont want to be misdiagnosed and have an automimmune disease eating away at my insides while I puff on an inhaler because they think I have seasonal allergies. Can allergies cause inflammation from an auto immune disease to flare up? Because this started happening just as the weather changed.

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    For your sake I really hope you don't have lupus, however I do hope you and your docs can figure it out. Maybe get a referral to a lung doctor,but to answer your question, yes ,with lupus it's common to suffer with breathing, we get pluerisy and or inflammation around the lungs, and it can be painful.

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    Breathing is not optional - I'd ask to see a pulmonologist if you don't feel like you are getting any relief from what your other doctors are giving you. Lupus (and other autoimmune diseases) can affect the lungs, but so can a lot of other things. No matter WHAT it is, somebody needs to help you feel better! Don't give up.

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