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  1. #1
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    Default Need Advice

    My name is Katie Greenawalt and I am new to this website.

    I have not been diagnosed with lupus, but I am almost positive that I have it. I have been having symptoms for a while now. I am 18 and have had so many medical issues in the past 2 years that it is hard to keep track. I have been doing research and it seems that every symptom I have matches what a person with lupus goes though. The first symptom I had was issues with my blood. I have had anemia and also a low white blood cell count. The low WBC count was found after I went to the doctor after being tired and extremely run down all the time.

    I went to a hemotologist who couldn't explain why my WBC were so low. Fortunately after my second visit to the hemotologist, my WBCs were back up to normal. While I was there he did so many blood tests, and one was positive, meaning that I could have an autoimmune disease (I forget what test it was). He said not to worry about it because it may never affect me, but now I am not so sure. I am constantly having severe pains in both of my legs. I describe them as growing pains. They get worse during cold weather and after a workout. Sometimes I just want to chop my legs off they get so bad.

    I also am constantly having stomach pains that come and go randomly. Nothing I eat seems to trigger the pain either. I have had severe headaches all my life as well. I have a rash on the inside of my arms on the opposite side of my elbows that comes and goes. It is red and scaly and I have read that people with lupus can get these rashes all over. In addition, my hands and feet are always SO COLD. Even if I am siting inside in a heated house my hand turn really white and freezing. I feel like I need to be wearing gloves all the time.

    And finally, I have struggled with fatigue and depression for so long now that I sometimes feel like I will never be able to live a normal life. I wake up tired even after a full night of sleep. I have hid these problems for so long because I feel like I am some crazy hypochondriac. My mom doesn't take me seriously when I mention some of my symptoms to her. The only person who I can confide in is my boyfriend. He wants me to go to the doctor so bad because he sees what I go through everyday. If it wasn't for his support in me I wouldn't be able to make it through the day.

    I am in my freshman year in college and I find it so difficult to manage my symptoms and focus on school. I just want answers, but I don't know what to do because I can't get through to my mom. My boyfriend has offered to go with me to the doctors, but i feel weird going without my mom. Sorry this is so long, but I would appreciate any advice possible from the people who know lupus better than me.

    Thank you.
    Last edited by rob; 01-10-2012 at 09:14 PM.

  2. #2
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    Hi Katie and welcome to WHL.

    I can't tell you if you have Lupus or not and honestly, neither can the doctors until they figure out what you DON'T have. Lupus is a strange disease because there is no actual test for it. There are these weird group of symptoms that differ with each of us (and yes, the ones you have could be part of the disease) but no way to say "yes, you have Lupus". A lupus diagnosis comes after they have ruled out everything else. Below I am posting a link that describes how Lupus is diagnosed.

    Criteria for diagnosing Lupus


    Sadly the majority of us have gone through what you are going through now. My suggestion to you would be to find a rheumatologist and go see him/her. Take pictures of of your rashes in case they are gone when you go to the appointment. Write down every symptom that you have had so that when you get into the doctors office you don't have to remember off the top of your head.

    Please stay in contact with us and keep us updated. You are now part of the WHL family and we are always here for you
    Mari

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

    ~Winston Churchill~







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    hi kate, and welcome.

    i hope you are able to find out what it is that you have.
    as mari has said.
    lupus is usually only diagnosed, after, they have been able to rule out lots of other things.

    i suggest you see a rhuematologist.
    this type of doctor specialises in they types of problems you have.

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    Don't give up....I am so glad you have supportive people to help you. Believe in yourself, and keep searching for answers. Remember that even a "no, you don't have 'X'" is a clue on the path to figuring things out...it can take a while. It's hard not to get discouraged. Remember that doctors are like the guys in that fable about the elephant - each doc is only seeing what they are trained to look for, but YOU know your body and your experience...just keep plugging along.

    People here on this site are wonderful with support and advice. So glad you found it!!!! : - )

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    Hi Kate,
    Welcome to WHL. You've already gotten some great advice. Document your symptoms and find a good rheumy who will listen to you.
    I think that it would be a good idea to take your boyfriend along to your appointment, since he's the one who has seen your symptoms and is so supportive.
    He also might help you to remember what questions that you wanted to ask.
    When I was in college and had some medical problems, it was my boyfriend (now husband for 35 years) who took me to the hospital, helped me to ask questions, and took care of me back at the dorm.
    Look through the threads here and read the stickys - I'm sure that you will find lots of information about the symptoms that you mentioned.
    Hugs,
    Marla

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    Hi Katie,

    I remember going through the same thing at the same age. I was sick for a year (age 18) before being diagnosed (at 19). I'm not saying you have lupus but I remember I had a running joke with my friends that I was going through the alphabet with something different wrong every day. My mom was really kinda terrible in that everything wrong with me she dismissed. She always used to say "oh, I get that too". I felt so "unheard". I know what you mean. It was awful. I was so thankful to get the diagnosis so they knew I wasn't crazy. You will get there. It's a journey, that's for sure. I wish I kept a daybook and recorded everything during each day that I had to "complain" about. It would have been better to record it then to suffer in silence, which is what I tended to do. There are too many complaints to verbalize... I felt like people didn't want to hear it or they gave me crappy answers (like my mom did). You learn quickly to bottle it. What a blessing you have your boyfriend.... use him to go to all your appointments!!! I don't know what your mom is like, but perhaps when you get a diagnosis, she will then get on board.

    I hear you girl! It's tough, but it builds our character!!!!! You rock!!!

    Heather

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