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Thread: I am NOT having a blood marrow test!

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    Default I am NOT having a blood marrow test!

    Lol. I know I'm probably not being a big girl but I'm sorry, I'd rather pray and hope everything works out w/my platelets instead of doing the bone marrow testing. My platelets are low so the hematologist had me give blood around 3 or 4 times. The last time was Friday. I didn't want to do that because I couldn't understand why they couldn't come up w/a diagnosis of ITP w/the last blood drawn. The Nurse Practitioner told me on Wednesday that my blood smear came back saying my low platelets were due to autoimmune issues. I know (from researching) that ITP is a diagnosis of exclusion, BUT if I have lupus (which is actually how doctors diagnosis a person w/lupus often, they have ITP), low white cell count, low platelets, and the smear indicates that it is autoimmune, why can't they confirm at this point that it's ITP. The last results I received today indicating I don't have some type of Gluten thingee. So, last week, the Nurse Practitioner mentioned if I didn't have the Gluten thingee that they'd want to do a bone marrow test. I said nope. I know, like I said, I'm not being a big girl. But, I just can't do it. Can anyone give me some feedback. W/all that's known right now from all the blood tests, why won't they just say I have ITP?!

    Thanks guys!

    p.s. I hope everyone is feeling as well as can be expected!

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    From my experience with ITP, I was hospitalized when they said they needed to do a bone marrow biopsy. I agreed because my symptoms were so sudden (one day I was fine next day I had bruising and a plt count of 2000) and I wanted them to rule out luekemia since Lupus had not been diagnosed at the time. To my knowledge a diagnosis of ITP can only be given if all other possiblities are excluded. What treatments have they tried so far? PDSA.org is a good site for more info on ITP and to ask questions in their forum.
    Last edited by Leksie; 06-22-2009 at 02:33 PM.

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    Quote Originally Posted by Leksie View Post
    From my experience with ITP, I was hospitalized when they said they needed to do a bone marrow biopsy. I agreed because my symptoms were so sudden (one day I was fine next day I had bruising and a plt count of 2000) and I wanted them to rule out luekemia since Lupus had not been diagnosed at the time. To my knowledge a diagnosis of ITP can only be given if all other possiblities are excluded. What treatments have they tried so far? PDSA.org is a good site for more info on ITP and to ask questions in their forum.
    They've not tried any treatments since as you said, a diagnosis can only be given to me after excluding everything else. They ruled out everything now. Thanks for the link. Like I said, I'll take my chances & hope my platelet count doesnt fall as low as yours, and others on here. That's the only way I'll do it is if I'm hospitalized. I'd rather have my spleen removed.

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    hi wantitgone,

    i don't suffer with ITP so i can't offer any advice...i just want to tell you how sorry i am that you are having to make such a difficult decision. I know you will make an informed decision, and you will do what is right for you, not the dr.
    Phyllis

    share a smile today

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    Quote Originally Posted by WantItGone View Post
    They've not tried any treatments since as you said, a diagnosis can only be given to me after excluding everything else. They ruled out everything now. Thanks for the link. Like I said, I'll take my chances & hope my platelet count doesnt fall as low as yours, and others on here. That's the only way I'll do it is if I'm hospitalized. I'd rather have my spleen removed.
    Having your spleen removed is no fun, I've had it done. It'll put you at risk for so many other things. Like my girl Niecy from Clean House says I think you need to take a big girl pill. The marrow test is not so bad. But is entirely up to you and if they have not started a course of treatment I wouldn't worry about either at this point. Always do what you feel most comfortable, good luck that you don't need either procedure. Good vibes your way...

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    Hey
    I have ITP, caused by lupus. BUT when i was diagnosed with ITP, i didnt have the lupus diagnosis. In fact the ITP diagnodid led to the lupus...
    Anyway, my platelet count was 0 when i found out. They gave me a platelet transfusion, then started me on prednisolone, and i had 3 days of intravenous immunoglobulin.
    My hematologist did suggest a bone marrow biopsy if i didnt respond to treatment, as well as the removal of my spleen if my platelets drop once i come off the prednisolone. Trust me, you would rather know what is causing the ITP that not know? And i would think much better than a spleen removal, that has ongoing side effects....
    *~* Monique *~*

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    Quote Originally Posted by Monique89 View Post
    Hey
    I have ITP, caused by lupus. BUT when i was diagnosed with ITP, i didnt have the lupus diagnosis. In fact the ITP diagnodid led to the lupus...
    Anyway, my platelet count was 0 when i found out. They gave me a platelet transfusion, then started me on prednisolone, and i had 3 days of intravenous immunoglobulin.
    My hematologist did suggest a bone marrow biopsy if i didnt respond to treatment, as well as the removal of my spleen if my platelets drop once i come off the prednisolone. Trust me, you would rather know what is causing the ITP that not know? And i would think much better than a spleen removal, that has ongoing side effects....
    But that's the reason I started this thread Monique. I already have a Lupus diagnosis and have had since '05. You didn't and was still diagnosed as having ITP and started on a treatment regimen, without having a bone marrow test. I don't understand why they can't start treatment and then if I don't respond possibly consider the test. That's exactly what was done w/you. Thanks you guys for all the responses. I'm not taking the big girl pill anytime soon. I will talk w/the hematologist today and ask the questions I've asked on this thread. If I don't get answers I'm comfortable with, I'll seek out a 2nd opinion.

    Again, thx everyone!

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    Quote Originally Posted by Leksie View Post
    Having your spleen removed is no fun, I've had it done. It'll put you at risk for so many other things. Like my girl Niecy from Clean House says I think you need to take a big girl pill. The marrow test is not so bad. But is entirely up to you and if they have not started a course of treatment I wouldn't worry about either at this point. Always do what you feel most comfortable, good luck that you don't need either procedure. Good vibes your way...
    I most certainly do not want my spleen removed. No way! But, I don't want to do the bone marrow test & my impression from my conversations is they don't want to diagnose me w/itp until they've performed the bone marrow test. I wish I didn't have to worry about it at this point but I don't see any other way to look at it... unless that is, I go to someone else & get a 2nd opinion. Hopefully the 2nd hematologist will start me on a treatment regimen & that'll work. Then, I won't worry. Thinking about my platelets abruptly decreasing is definitely something I worry about. I think anyone would.

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    Want it gone,
    R u taking any meds for lupus at this time?

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    Hi Want It Gone,

    I am saying some prayers for you. I hope everythings works out and you don't have to have a bone marrow test. Maybe get a 2nd opinion and go from there.

    It's been a while since we talked; I was wondering if you were ever dx'd with Fibro? You had explained the burning pain. I am just curious.

    Take care & God Bless,

    Faith

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