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    Old 05-19-2005, 07:11 PM   #1
    deedea
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    Just Unreal!!

    Hi! I have posted here a few times and gotten really great information. Thanks again. I just wanted to vent and maybe get some more info from anyone willing to share. I finally went back to my dr. yesterday (ref:dr. frustrations). After about 40 min. she was finally in to talk to me, when my blood tests came back she called and told me high bilirubin was her only real concern, yesterday she showed me a corrected report from the lab that was faxed to her office on April 19, explaining a mistake made in previously reported results, one month later she finally has time to discuss this with me. Turns out my WBC and RBC are low, bilirubin and something called MCH are high(bilirubin higher than previously reported). I was astonished that she has had this info for one month and neglected to contact me, obviously I got a little upset, she assured me that she was going to be very active in getting a diagnosis of whatever but she was referring me to infectious disease dr. Following this discussion she did a tongue culture (white chalky substance forming on tongue), repeated CBC, and a test for Epstein-Barr Virus. Not sure what this is, I have found a few different sources of things that are so different that now I am just confused. I am also not sure what the MCH that is high count on my blood test is. Any information on any this will be appreciated. Also any comments about my dr. having a total lack of concern about lab mistake. I really have to question if this lady even knows what she is doing. Oh yeah I almost forgot the best part, she had to call another dr. in another office to ask how to do a tongue culture. JUST UNREAL!! Well thanks for letting me vent, hope everone who reads this is doing well.

     
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    Old 05-19-2005, 11:13 PM   #2
    AngelicBrat
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    Re: Just Unreal!!

    deedea!

    First off, I am completely not impressed with your doctor. What doctor does NOT know how to do a tongue culture???!! My bet is that your culture will come back as Hemolytic Anemia or 2) B12 deficiency. The one my bet is on is Hemolytic Anemia. I will explain more below. It's not that hard to figure this out! Sheesh these doctors make me shake my head. I am going to explain your blood work results first:

    1) High Bilirubin- Bilirubin is processed in the liver and secreted into bile. I have a feeling that your bilirubin is elevated due to Hemolytic Anemia. Hemolytic Anemia can be a part of Lupus (because I am sure you are wondering!!) and its quite common. Basically it is IRON based anemia and it occurs as a result of premature or increased destruction of red blood cells.

    2) High MCH (mean corpuscular hemoglobin)- This is another test confirming that you have anemia!

    This is not brain surgery trust me! Your doctor is not very good at all, and I would suggets finding a new one as soon as you can. I doubt that the lab tests are wrong because you had 2 that GO TOGETHER which doesn't happen by accident. It's like pieces to a puzzle, and you have two pieces that fit together plus symptoms (I am going to list some for anemia and I bet you have all of them!). Your tongue being white is the biggest sign of anemia and when I read your post I knew thats what your doctor missed right away. I do work in the medical field but I am not a doctor. That is basic medicine 101 to miss that.

    Main Symptoms of anemia are:

    Chills, severe fatigue, pale skin color, shortness of breath, rapid heart rate, yellow colour of the skin, and dark urine. As for your tongue... it can be related to iron based anemia OR it could be from B12 related anemia also. I have both B12 and Iron based anemias. What your doctor needs to be doing is doing more blood tests to confirm this diagnosis for you. Also, they need to see if you are lacking the "intrinsic factor" which basically will tell them if you are not absorbing iron/B12 in your stomach. Do you have stomach problems? The treatment for anemia varies depending on how severe your symptoms are. I am on iron tablets every day to help with mine. You will find a BIG relief in some of your symptoms when you take the iron tablets!

    What are all of the symptoms that have brought you to our Lupus board? I am interested to hear everything because I don't think we have met before. I also am wondering if you know of any other blood work that you have had positive? If you don't know, I always suggest to patients to get a copy of your medical charts. Try and get them as far back as you can (even your childhood ones help!). Its very interesting when you look back at your past symptoms and find out different patterns! I have had Lupus for 12 years but the doctors didn't diagnose me because they are covering up a mistake that they made that could have killed me. I ended up going out of the country to get diagnosed because no one would listen to me here an dthey were starting to say I was crazy. It was just because no one wanted to be accountable for what happened to me. Thats why I suggest to everyone to get your blood work and other testing from the past and right now. My bet is that you will find positive antibody tests if you have been experiencing Lupus like symptoms for a prolonged period (off and on). Being diagnosed (or having Lupus ruled out) is a journey. There are lots of bumps in the road (Like your GP!) and cool curves. The journey can be short or long, but you will always meet some neat people along the way.

    I think that if you find a new GP that has half a brain then you will be on your way. This GP missed something that is very obvious and that makes me really nervous on your behalf. Its easily treated, but missing it means that you have to suffer with extra crappy symptoms until your GP figures out that you need iron replacement!! If they miss that, then they are not going to be smart enough to get you to the right doctors to get better! I hope that you find a new one and then you can start from scratch. If you do find a new GP, then you can take your chart to the new one by yourself and take that opportunity to copy the contents of the chart! We have a right to our charts BY LAW and lots of patients dont realize that. They are OUR charts and the doctors are borrowing them. You can get anything you want I Hope that I haven't scared you or anything, knowledge is power!! Take care!!

    ~Angelic

     
    Old 05-20-2005, 06:29 AM   #3
    Lupus-n-Sjogren
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    Re: Just Unreal!!

    white on tongue can also be yeast infection
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    Old 05-20-2005, 08:02 AM   #4
    deedea
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    Re: Just Unreal!!

    Hi again, thanks for the input about my dr. being a little less than dependable. Just to give you some more info I am inserting my original post here (from what I have read I think it was when you were at the beach, glad you had fun)
    --------------------------------------------------------------------------Dr. frustration

    Hope this finds all doing well. I have continued to read posts here to educate myself since my dr. seems to have forgotten that she had a patient with concerns. I went to see the surgeon who performed a biopsy on one of my numerous enlarged lymph nodes. Incision healing fine, no cancer(yay!). My GP has not requested any more testing and said some people just have enlarged lymph nodes with no explanation. O.K. but what about my constant swelling and pain? What about my unexplained rashes, redness and fatigue? I don't know what else to do. If my doctor refuses to order more testing I am kind of stuck, my insurance won't pay for anything w/out a referral from her. I have found myself unable to complete daily tasks and people I work with who are not aware of any of my visits or even my biopsy are always telling me that I look horrible(thanks), and asking me if I have been sick. My fiance and parents are as worried as I am, I have lost 18lbs. in 6 months without any diet or eating changes. I really look bad. Sometimes I just stand in front of the mirror and think that I will eventually deteriorate. I have thanks to all of your information started to limit my sun exposure wich is difficult in the spring with 3 children(8 and under) who have cabin fever with being indoors all winter. I have a great job that I have always excelled at and have always been an avid housekeeper, but in the past year I have seen all of these things deminish. I feel so tired of being tired. Well sorry to be so depressing but I feel better just being able to vent. Hope you all are having a great week. Thanks again. deedea.

    So when I went to the dr. 2 days ago I also found out wich I kind of knew that I had lost 4lbs since my last visit 5 weeks ago. I tried to tell her about my suspected sensitivity to the sun, and although I don't get a distinct butterfly rash my cheeks and nose are red and blotchy when coming in from outside, while the neck, forehead, and jaw area look normal, when I am cleaning house or working in one of the restaurants I get really tired really fast and sometime think I could fall asleep just standing there. It's kind of like I just can't go on and even though I push myself by the time I get home I am just finished, driving home is the worst b/c my body hurts and I have a 1 hr. commute from some of our locations and it is really hard to sit still that long and stay awake. I am 5'3" and now way 98lbs. I have always been thin, but now I just look disgusting, anyway you didn't mention Epstein-Barr Virus but I found something indicating it is the virus present for mono, I have been this way for 6-8 months, does it sound normal to test me for that, I thought mono presented with sore throat, fever, and mouth sores, which I have none of. As far as medical charts I haven't been to a dr. other than to have my children in like 12 years, so I don't even know that I have any medical charts. When I first started feeling bad about 1.5-2 years ago I convinced myself it was just stress, I have never been the type to go to the dr. for a cold or anything, I always put my family first, now I know that this is a little more than stress and am hoping for the best. Thanks again for all your help and for just listening. deedea

     
    Old 05-20-2005, 10:44 AM   #5
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    Re: Just Unreal!!

    Dear Dee Listen to Angelic, get another doctor, what kind of diplomas were on her wall pre-school!!! She would not build confidence in her abilities if it were me..

    Good Luck!

     
    Old 05-25-2005, 11:33 AM   #6
    deedea
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    Re: Just Unreal!!

    Just wanted to state a few things that happened at my latest visit with my so called "dr." ( and I use the term lightly). She let me know that a tongue culture came back as Leukoplakia. Could come from smoking, or a breakdown in the immune system. Epstein-Barr Virus came back positive(from my research almost 70% of the population would test positive) She said it was not positive in the way that would suggest that I have been exposed to Mono in the last 8 weeks or so ( I told her that). Her next comments were out of this world. She said my regular bloodwork was unchanged from previous tests. She suggested that we "wait and watch" for about four weeks because it was her medical opinion that in the next four weeks I would begin to feel progressively better or progressively worse. Do you have to be a doctor to determine this? She said she would have the receptionist set something up for end of June. I told her not to bother, requested a copy of my test results and left. I am so frustrated. I still feel and look miserable. I have not really worsened in the time I have wasted with her but I have not shown any signs of improvement either. I am going to try to see if my insurance will let me see another dr. for a second opinion. I am not saying I have lupus but alot of things I have seem to point in that direction. If I could wake up tomorrow and feel like myself again I would be delighted but I don't believe waiting is the answer here. If I were to lose any more weight my 8 year old daughter would weigh almost as much as me. I am at a loss. Any advice or even encouragement to proceed would be a blessing. I hope that all of you are doing well and have better medical experiences than what I have encountered. Have a blessed day. deedea.

     
    Old 05-26-2005, 12:46 AM   #7
    AngelicBrat
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    Re: Just Unreal!!

    Hi deedea,

    I am sorry that you had to have another AWFUL encounter with the doctor from H-E-L-L!! What an idiot that doctor is, how silly could she be!!! Your not going to feel better without being properly treated and she should know that. Oh my, I would have a lot of things to say to her if I came with you I am glad that you stood up for yourself and grabbed your blood work and ran. See if you can get a hold of all of the old test results too so that you can have a fresh start with a new doctor. Ask friends and relatives who they see, often that's the best way to find a new GP.

    I have been praying for you and hoping that things were getting better. Leukoplakia goes with Lupus for sure, and she should have recognized that right away! Did she even give you a mouthwash or something to help? There has been some research to indicate that the Epstein-Barr Virus test being positive does happen in a population of Lupus patients also. I am hoping that you can find a new doctor that is willing to listen and get you sorted out. I am sure that something autoimmune is going on with you and you need to be diagnosed and treated so that you wont get worse. Knee jerk medicine is the worst kind and it sounds like this doctor is a knee-jerker. The wait and see approach is not good when your not being treated.. I will pray that you can get a new doctor (with your insurance) and that the second opinion will be good. Please take care and rest up!! Talk to you soon,

    ~Angelic

     
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