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Thread: misdiagnosed???

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    Angry misdiagnosed???

    I am 31 yrs old and have had problems since I was a 6yr old child. I ws diagnosed with RA at 21. I have pain all over my body... It started in my righr knee at 6 yrs old. They started testing me for RA but no +rheumatoid factor. They bascially treated the symptoms with anti inflammatories which didn't work all that well. At 21 I was having real bad problems with my right hip. Family internal medicine Dr. sent me to a rheumatologist. They did tons of blood work and CT MRI and bone scans, and determined that I had RA. Rheumy. put me on Arava which helped for about 6 months and then just stopped working. I also had bad side effects to the Arava. night sweats, hot flashes, hair loss (alot) fevers, and just flu like symptoms with out being sick with the flu. So he put me on Remicade and Methotrexate. All through this time I am in a wheel chair. Couldn't walk, couldn't dress myself, couldn't do hardly anything myself. After about the 5th Remicade infusion I started feeling better. I was able to get out of the wheel chair and return to a somewhat normal life. I still had flares that were dibilitating, but they were few and far between. In 2006 I got pneumonia, which turned into pleurisy as the pneumonia cleared up. I was once again bed ridden and in horrible pain. I had the pleuritis and costchondritis for 21 mo. It was horrible.. Every breath I took hurt, my chest hurt all the time. In June of 09 I was in a really bad flare, feet and hands were so swollen I couldn't do anything but lay in bed with ice and heat rotating on my hands and feet. A few days later my knees, my hips, my shoulders just started hurting so bad. Called my Rheumy. and found out he had retired! So they set me up with another rheumy. in his office. I was unable to see him for a few months so they got me into see his PA. She told me that she felt that the Remicade had burned out and quit working. She put me on Enbrel, and took a whole bunch of blood work. The Enbrel gave me unbearable side effects. headaches, my hands and feet were red and HOT to the touch. I took a thermometer and put in between my hands and feet. The temp was 103.4 between my hands, and 105.8 between my feet. I called the after hours Rheumy. he told me to take some benadryl. Thank god that worked. Benadryl every 5 hours until symptoms suside. I still feel sick feeling from the Enbrel.
    Meanwhile my blood work came back. low plateletts, low rbc, low wbc, high sed rate, negative rheumatoid factor, and postivive ana at a high level. So now they are treating me as if I have SLE but not commiting to a diagnosis. He wants to get to know me and my history better before changing diagnosis. I have or have had 8 out of the 11 criteria for SLE. Very Frustrating I just want to stop hurting. They stopped the enbre and put me on prednisone, plaquinil, and ketoprofen. I am feeling a little better. I am so plagued with fatigue though.
    I am also having problems with my bladder. I feel like it's full all the time. even after I uriniate I feel like I have to go all the time. no uti and no vaginal infection. Dr. put me on Ditropan yesterday, we will see if that help. I hope so.
    Has anyone else had this hard of a time being diagnosed? Please help and so confused and frustrated. Really need somone to talk to that has been through all this. Thanks

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    I know that you may not want to hear this, but you story is all too common. It took almost a year before I received a positive diagnosis. And that was after they said that they were pretty certain that I had Lupus.
    Many of us have been initially diagnosed with RA prior to receiving our Lupus diagnosis.
    The problem is partly due to the fact that both diseases are auto-immune diseases and both have similar symptoms. Also, Lupus develops slowly in some of us and even changes during the diagnostic process. Lab work will not always confirm Lupus, so doctors are very reticent to make that diagnosis. Blood tests that are positive this month can be negative next month.
    The other problem is that, all of the positive blood work that you've mentioned can also be attributed to other auto-immune diseases. So, diagnosing auto-immune diseases is just as frustrating to doctors as it is to us. They must go through a process of elimination in order to rule out diseases, one by one, until there is only one answer left. For many, an answer is never received and they are told that they have undifferentiated connective tissue disease (which means, there is an auto-immune problem going on, but doctor's don't know which one it is!).
    You are lucky, however, that your doctors are treating you, even in the absence of a definite diagnoses. Many of us have not been that lucky and have had to endure pain and multiple symptoms without treatment because we were not diagnosed.
    You appear to be doing a good job of keeping track of your symptoms, your meds and how they affect you. Keep this up, it will help you immensely when working with your doctors on a treatment regimen that works for you.
    We are here to help you as much as we can by providing information, answering questions, or just giving you support. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    wow - I am so sorry you have had all those problems! Do you live in a small town? Can you get to Seattle or Portland or somewhere they might have a deeper rhumy staff? My sissy lived in WallaWalla when dxed with RA and it took way too long to get good care.

    Maybe a dx isn't the most important thing, though it seems to give some defintion for the patient, I think a lot of these auto immunes are so similar - and you may have more than one. It seems to me that treatment for these auto immunes is symptomatic, you know anyway. What does your ANA look like? Have they ruled out leukemia, MS and all those non auto-immunes?

    Hope the new drug regiment works for you -
    much love to all my lupie friends -

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    I live in Omak, Wa and see a rheumatologist in Spokane, Wa. They have ruled out neurological diseases. I'm not sure about Leukemia. my ANA was very high according to the doctor.

    I am just so frustrated. For 10 yrs they treated me for RA, and now well you may have Lupus. It's scarey and frustrating! I just hate being in PAIN!!!
    Thank you for your input!

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    Smokerscat,
    I have been sick on and off for close to 16 years. In that time, I have been poked, prodded and pricked by more doctors then I can count on all my fingers and toes together. The list of names their names is so long that they are impossible to remember all individually and their faces have morphed and blended over time. I have heard all sorts of rational and irrational explanations for my seemingly unrelated symptoms ranging from Connective Tissue Disorder to bedbugs (that doctor didn't last past that one visit). I want nothing more then to get off this rollercoaster of health and invisible illness. I feel like a permanent diagnosis will help me to endure the ride, and validate the physical and emotional feelings I have experienced. I wish I could alleviate your frustration and provide you with some answers to your questions, but all I can do is offer you a shoulder or ear when you need one and to let you know that as crappy as this situation is, you are not alone.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    PS - I forgot to tell you - Welcome to this site! It's really a wonderful place to be when you are feeling all alone in this world of medical uncertainty.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Default hi

    Oh im sorry you have been through so much,but glad you are being given meds to help ease this pain.As you have heard many of us have waited a while also and still have no diagnosis.For me i started being sick in 2004 and am still waiting.At Christmas was told it was Lupus but then was told it was many other things since.Tomorrow i see the rheumi again and am hoping to be strong enough to demand what i want.I havent got much hope but a little so hope thie 'little' is enough as like you am soooooo frustrated.
    I really hope soon you get a diagnosis,but until then keep coming here as many members will understand what you are going through and will give you good advice also.Just try and keep strong.You are not alone!!

    Love n Gentle hugs
    Amanda.xxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    hi smokerscat,

    your story is so familiar, but this does not help you. I know you are frustrated and scared, but i promise, you will be ok. The members here will help you identify common symptoms, and if you document these symptoms, then it will help the dr. make a diagnosis.

    I was first diagnosed with fibromyalgia and then 12 years later, lupus was added. Even though i have always tested positive for lupus, there were not enough symptoms to meet the criteria necessary for a diagnosis. I did not realize that lupus symptoms could come and go and change places, so when my dr. would ask about a particular symptom, i did not answer "yes" unless i was experiencing that symptom at that particular time.

    So, start your log, read about our different symptoms, and document any that you have every had.

    good luck, we will help you get through this.
    Phyllis

    share a smile today

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    It is so nice and comforting to know that I'm not alone! Thank you all for your support!

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    Default hi

    How are you feeling today? Hope you are easing up a little.So glad you found us.

    Love Amanda.xxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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