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Thread: help please

  1. #1
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    Default help please

    I am very distressed... I am going thru all the tests and taking the meds... the tests haven't come back positive for lupus yet.. but they are treating me with plaquenil and anti inflammatories as I have the symptoms... does anyone have any ideas what this could be if it is NOT lupus... I have the joint problems.. breathing problems.. tired.. achy... rashes.. I am too tired right now to try to list... but I was laying on the couch last night.. Christmas night.. and I was laid up on the couch with a heating pad on my knee cause I couldn't walk.. my husband finally brought me a half a darvocet and I took it.. but they make me itchy... and nauseated.. but it was one pain for the other... and then I thought... is this what I have to look forward to the rest of my life.. will it continue to get worse.. can it be something besides lupus.. maybe something that they can fix if they could get on a different trail?? anyone..?? my ana hasn't come back positive yet.. my rheumatiod factor isn't high ... soooo... any suggestions from anyone that can help me find the help I need...? I feel like I am hanging in limbo... My father just passed away before thanksgiving and he had Parkinson Disease.. and I don't want to waste away and be a burden to someone ... not that he was.. but I know him and I know he felt like he was... any words?? any..
    POOH1988

  2. #2
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    Default Pooh

    I'm sorry for the loss of your father - this must be a very distressing time. Are you seeing a specialist like a rheumatologist, or another type of doctor? i wasn't clear from your post if you are waiting for the results of your ANA test, or if the ANA test had come back negative. If the ANA test was negative, it doesn't completely rule out lupus as a diagnosis, but it does make it less likely. With the very sensitive ANA tests available now, only about 3% of lupus patients are ANA-negative.

    The problem is there are many illnesses which can cause lupus-like symptoms - including autoimmune diseases like rheumatoid arthritis, viral infections like mononucleosis, and other rheumatic illnesses like chronic fatigue syndrome or fibromyalgia. There are just too many other possibilities for any of us to really give you much information without knowing more about your particular symptoms. So finding a good doctor who is willing to work with you to look at all the possibilities is really important. If you are seeing a general practioner, then the next step might be finding a rheumatologist. But getting a diagnosis for a chronic illness can be a long, involved process. Sometimes you just have to wait until the pattern of the symptoms is clear enough to point to a specific illness. But please don't feel that you have to go through this alone - there are other people right here who are also in the diagnosis limbo. So, please, don't get too discouraged - sooner or later, it does sort itself out.

  3. #3
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    Default

    I have been dealing with these symptoms for about 7 years now.. my aunt has rheumatoid arthritis.. and so i thought perhaps.. maybe it could be that.. but they doctors are going by some list of symptoms and... I can't remember all of them on that little check list.. but suffice it to say...
    oh the ana has come back negative so far.. but they say there are more specific tests they can do.. no they are family doctors.. they are talking about a rheumatologist... i hate sounding like a whiner.... the joint pain.. is most bothersome... especially when it renders my unable to walk or even move... i have shortness of breath.. especially tonight.. i have a terrible rash on the back of my head that NEVER goes away.. as well as my skin will just feel like sometimes that it is burning.. and i get unexplained red rashes... my arms and legs at times feel like they weigh a million pounds... i just feel bad... and i am tired of feeling this way... i want to enjoy life.. and not be so tired and or unable to do anything.. even if it were a walk with my husband.. they are treating my symptoms.. because they say.. it is what they feel we need to do right now.. i am sure they are right and know what they are doing... but... the whole ana thing is what is throwing them and me.. because it came back negative.. but i have everything else going on?? i guess it is a wait and see thing.. and i am just not a patient person.. i want to be fixed now.. what ever happened to take two aspirins and call me in the morning? huumm.. thanks for letting me whine...i needed it...
    POOH1988

  4. #4
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    Default

    Maybe you should try a different doctor. I saw a Rheumatologist for a few years who wouldn't diagnose me because I didn't have the butterfly rash even though I was +ANA and had lots of the other symptoms. I went into remission for 8 years but now I'm sick again and waiting to get in to see a different Rheumatologist. I still haven't been diagnosed but I think this new guy will be better at listening to me.

    If a diagnosis is really important to you go see a doctor who is more comfortable making a diagnosis. Even though it won't change your symptoms or even your course of treatment, it might be worth it for peace of mind. I know that I personally feel the biggest challenge to being undiagnosed is that I know how sick I am, but until I have a word for my disease I feel like other people don't get it. I've even had doctors try to send me to a psychiatrist because they thought it was all in my head.

    This year I finally found a family practice doctor who believes me and I feel like we have a partnership and are working towards the same goal. It makes all the difference in the world to feel validated and have someone say they believe me, especially when they know its possible to have a really bad flare up and still have totally normal test results across the board.

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    Default

    Thanks for the advice.. I actually am going to a new rheumatologist.. the doctor I am seeing is a family doc and she totally believes that I have a "smoldering" case of either lupus or something in that family.. mixed connective tissue disease... since she put me on plaquenil ;and I still had a flare at christmas... well.. actually three of them over the holidays.. she says the next step is a stronger med.. they took more blood to check my liver functions.. as well.. as.. I printed off what tests Marycain advised they do and they are doing those as well... I don't want to have this disease.. at all.. I just want someone to say.. oh.. it is this.. and here is the magic pill.. now take that and go about a normal life.. your fixed! but no one can do that? sooo.. I know the frustration you feel as well.. I know when people ask me what is wrong.. my standard answer is "some of the new is wearing off of me"... it is just to long and hard to explain.. well.. they think it MIGHT be lupus or some other connective tissue disease.. but I don't have a confirmed diagnose and so .. for now.. we aren't totally sure we are just trying different meds to see if something will give me relief.. see.. too long.. huh? ha ha.. anyway... I have at least found this site to be comforting and informative.. but a little depressing at the same time... anyway.. I hope this doc is just a magic doc and fixes it all! and I hope yours is too!
    POOH1988

  6. #6
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    Default Hi!

    I know lupus is a hard thing to diagnose. Just because the tests are negative now doesnt mean that you dont have lupus. My Mom was tested several times before she got a positive result. There are other illnesses similar to lupus, so dont rule out other options. Which I have no advise as to what it could be. Hang in there, I know what it is to be in pain. I couldnt walk or sit up for a year but I had to go to work every day because I am a single parent. I hope you pain eases off soon and that you feel better soon
    Kathleen Gardo

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