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Thread: My Husband

  1. #11
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    Default

    Another suggestion I would make is to have the lab give you a copy of all test results. I have a spread sheet so that I can keep track of the important "numbers" for myself. I slipped through the cracks getting diagnosed, but I won't ever again! Just an idea to help you both feel more informed and manage this disease.

    Also, diagnosis and dealing with a chronic illness can be stressful on a relationship. I know you are doing your best to care for your husband, but don't forget to take care of yourself, too. This is so important and you deserve to get support as well. I hope that coming here to talk is helpful to you and I hope that you realize how great you are for being a supportive spouse. Having Lupus and a caring, supportive husband, I can't tell you how important that is to me managing my health. I applaud you for all you are doing.
    Missy

  2. #12
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    Default Marycain and Missy

    Larry has been having his thyroid levels checked every month and since he has been on synthroid, his levels are normal. I am starting to think that his former rheumatologist didn't diagnose him properly. Since day one, I have had a strange feeling about it because I have read over and over again that it takes a while sometimes to be diagnosed. He went to the rheumatologist for the first time in July and the doctor did the ANA test and some other tests ( don't know what they were ) and then when we went back the next week or so, he told us that Larry had lupus. Neither one of us knew what to ask because we didn't know anything about any autoimmune diseases. The third or fourth time that we went to the doctor, Larry complained about his throat feeling sore and his eyes being so dry and the doctor said, " that's because you have sjogrens." That's the first time we had heard about that. That caught us off guard. We just don't know what to do!! I just feel like there is something else, maybe along with the sjogrens and lupus, going on. We need answers. It is very hard to see Larry this way! I know he is depressed, He is taking cymbalta 60 mg, and I am taking Lexapro 40 mg. We are quite the pair. I appreciate all of the help that you all have given me. Larry's cardiologist is having his medical records sent to him and we will also get a copy. This should be interesting to say the least. I didn't think about getting his lab results. Good idea! I think I already stated in an earlier post that we have not been told one single time what any of his "numbers" are. You probably know how excited I am that he will be seeing a new rheumatologist soon. I pray that she will be able to guide us in the right direction. I go with him to all of his appointments because he can't remember anything the doctor says, assuming the doctor actually has said anything! This has taken its toll on me but I really love Larry so much and I would never dream of not doing all I can do for him. His twin brother told my sister the other day that if it weren't for me, Larry would have never made it this long. I will continue to support him every way that I possibly can. If I could have anything at all in this world that I wanted, it would be for him to feel good. That would make my day. I know I have probably already told you all this, I can't remember didley anymore! But....his main complaints are terrible fatigue, chest pains, his stomach bloating alot, and of course the joint pain. He doesn't eat very much because when he does ear, it makes his stomach bloat worse and then he really hurts. These diseases are monsters. I truly never knew they were so awful. I sympathize with each and every one of you. I can only imagine how bad it is for you. Thank you for helping, and please take care.

    Grace

  3. #13
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    Did the doctor explain to you and Larry exactly how he reached the diagnosis of lupus? I'm assuming he had a positive ANA test, but that by itself isn't enough for a diagnosis of lupus. So Larry should have met at least three of the other ACR (American College of Rheumatology) criteria for a diagnosis of lupus. You are probably familiar with the ACR criteria from your other research, but if you aren't, please let us know and someone can steer you to more information.

  4. #14
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    Default Marycain

    No, he didn't explain anything to us and we were in such shock that we did not know what we should ask or anything. After all of this time, I now know that we both should have demanded a little of this doctor's time to tell us the things that we needed to know. The communication was awful. Every time that we went to see him, he would come into the room, shake our hands and talked as he was backing out the door. No visit lasted longer than 10 minutes at the most, excluding the time with the nurse who drew the blood for tests. I know nothing about his sed rate, or any of the others things that it seems you all know about your selves. I honestly think that Larry even knows less than I do. Larry told his PC doctor that he wanted a second opinion a couple of months ago, and she talked him into staying with this quack. I feel alot of aggression coming on! From now on, I am going to demand answers. I am also going to see if I can get Larry an appt. with my PC doctor. I think that would be a great place to start until we see the new rheumatologist.

    Grace

  5. #15
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    Default Lupus criteria

    I am assuming that his ANA test was positive, your guess is as good as mine, but I have also read where the ANA can be positive and the person may not have lupus. (?) He also has photosensitivity, and has had arthristis for years. I feel like I am in a nightmare.

    I am going to bed. I am worn out!

    Grace

  6. #16
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    Default I feel Hopeful!

    Today my husband, Larry saw a new PC doctor. He finally let me make an appt. for him with my doctor, and now he is so glad. There are going to be more tests and new meds tried and this has made me feel so much better. We will soon get the results for the tests that were taken today, but we already have been told his sed rate, which is 7. In September it was 66. Who knows what it was when this all started out. We will see his new rheumatologist soon and the doctor we saw today told us that she was known as the "lupus guru" in our state!

    Grace[/b]

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