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Thread: New to board, problems with doctors

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    Default New to board, problems with doctors

    Hi,

    I just found this board. I'm having a terrible time with my doctors and was wondering if anyone else had been through this. Any words of wisdom?? I started with symptoms in high school...chronic infections. I'd have tendonitis in my hands, shoulder, feet etc on and off. I got married at 18 and got pregnant right away but lost the baby 3 months later, got pregnant again 3 months later and lost the baby at 5 weeks. Then a year later I got pregnant and my joint pain, fatigue etc went away. I felt great except I had complications through out my pregnancy. My son was born 5 weeks early with an omphalacele (organs on the outside of his body) cp and other complications. About 6 months or so after he was born my symptoms came back. As the years went on my symptoms got worse and closer together. Then in 97 I was diagnosed with Lupus. I went on prednisone, methatrexate, plaquenile and a ton of other pills. I leveled out in my symptoms and my flare up were less severe. In 2002 we moved to Seattle (Navy family) and my doctor at UW suddenly said I did not have Lupus, my ANA was now negative. The Lupus test they did was negative. He took me off all meds and I just crashed. I am constantly in a flare now. I'm up and down, up and down. My symptoms are muscle pain, joint paint, in the morning I am stiff and have trouble bending, red face with bumpy rash (diagnosed now as roascea instead of Lupus rash), mouth sores, TERRIBLE fatigue, I feel almost like I have the flu, I run a low grade fever on and off, I have torn my achilles tendon just taking a step, same with my shoulder, I have numbness in my hands and feet, I get shooting zings of pain in my arms and legs, I've had hair loss before, I will get what almost look like boils. I have trouble with my stomach. I will go through periods where I can't keep food down, constant diarrhea. I had surgery to remove a ovarian cyst and when they opened me up they found I was full of adhesions. My bladder is constantly irritated and will bleed but I dont have a bladder infection. If I get sick it takes me twice as long to get well and hits me twice as hard. Now we have moved over to Port Orchard and suddenly my ANA is now positive again. I'm now trying to get in with a rheumatologist. Has anyone else been diagnosed and then told they didn't have Lupus? Right now I have a couple doctors fighting over what my diagnosis should be.
    Kathy
    Port Orchard, WA

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    Kstan;
    OMG!!! What kind of idiots are they passing off as doctors in the service???? I hope that he has not done you any irreversible harm!! Are you back on your meds???
    Most of us with Lupus have found that we must direct our physicians, insist that they acknowledge our illness and that they treat us for that illness.
    If your current doctors are arguing about what your diagnosis is, then you get involved in that argument and fight for your cause. Make it clear to them that when you were being treated for LUPUS, your symptoms were leveled out...when you were taken off of your meds, you crashed! Until they can decide amongst themselves, you want to continue with your lupus treatments!!
    You need to deal with a rheumatologist and he should be your lead physician. Ask him/her if they are knowledgeable about lupus, its symptoms, treatments and therapies. You must become knowledgeable about the disease, its symptoms, treatments and therapies so that you will be able to effectively deal with your doctors.
    One thing is for sure, Lupus is a CHRONIC disease....that means it does not just go away and then come back. It is with you forever unless you go into remission and that happens very gradually!!
    I wish you the best of luck! Keep us advised of how things go with your new doctor and your rheumatologist!
    Saysusie

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    That is just terrible what you have been through. Yes with the medications you can level out and blood work can be normal. The ANA is a very basic blood test that can change up and down. It should not be the only test to decide if the lupus is active or not. Since you did so well on your medications and you have 3 -4 of the 12 cardinal signs of lupus. You have lupus. We all have different signs and symptoms. Get yourself a good rheumie. I am sorry that you have found some doctors that are lupus stupid. Stick up for yourself and educate then ones that have no clue. You need to be on those medications they helped. And that was proven by your blood work leveling out and symptoms leveling out. Stories like this make me so mad and thankful in the same thought. I wish you all the best and I am here to help you in anyway. This disease has not cure but it is manageable and you story did prove that. Be good to yourself and also fight like a dog for yourself. You know your body and when the medical treatment is working or not.
    Best of luck
    Muriate

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    I am so sorry you've been put through the ringer like this. Keep on insisting on a rheumatologist who specializes in lupus. It's really hard to deal with doctors who don't know lupus and don't pass you on to specialists! Do you have someone else with you in the doctors office? Sometimes the hardest person to advocate for is yourself, so having a husband or mother along can be a boon. I recommend bringing in a lupus textbook or info booklet that says ANA levels are not always the end-all-be-all marker of lupus and you NEED TO BE IN TREATMENT! I am just gald that you seem like a strong person. Stick with it!
    wishing health and strength to all

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