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TOPIC: Mystery??

Mystery?? 6 years 10 months ago #36586

  • R5lover1
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I am not diagnosed with ITP, because my doctor doesn't know what I have, but ITP and Macrothrombocitopenia are the closest things to my condition. I have low and large platelets, but what I have has been familial. My mom, her sister, and my grandma have all had it, but they were just diagnosed with ITP. I'm not quite that lucky. I have to have a CBC every other week and go to my hospital every couple months. However, it is really frustrating because right now, my doctor is in the process of just observing me. Which, to me means to go to Primary Children's to have them say the same thing every week. And that is... My platelets are really low, and that I will possibly have to get my spleen taken out in a year or two. To hear this from my perspective (a 13 year old) it is really scary. All in all, my experience has been very stressful and frustrating especially with school and a family janitorial job

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Mystery?? 6 years 10 months ago #36609

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You seem to be very wise for a 13 year old. This is what I think based on your story.

Your Mom, her sister and your Grandma may all have familial ITP and were misdiagnosed. That happens often. If I were you, I'd make sure you get a correct diagnosis because if you do not have ITP, a splenectomy may not help at all.

Also, have you tried any treatment? How low are your platelets? Observation can be a good choice if you do not have an active lifestyle, but to go from no treatment straight to splenectomy is very unusual.

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Mystery?? 6 years 10 months ago #36621

  • Ann
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Did you read the new thread in the adult section where a guy has just been diagnosed with hereditary/familial thrombocytopenia? As Sandi says, a splenectomy and the other treatments for ITP will likely do no good so be careful.

Here's the other thread..

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/27658-likely-itp-diagnosis.html

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Mystery?? 6 years 10 months ago #36849

  • R5lover1
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I'm not going to have a splenectomy any time soon, but they say that could be a possibility. My hematologist is treating me with steroids. I'm on a pretty low dose right now, but when they start to titrating me off, my platelet count drops really low. Last week, I was at 7,000 but this week I'm at 48,000.
My mom thinks that there is some kind of familial thing going on. ITP is auto immune, my maternal grandma had Lupus. Thrombocytopenia is a characteristic of Lupus, and I have been tested for Lupus, but it is negative and I'm too young to know for sure. Has anyone ever heard of early history of ITP turning into Lupus?

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Mystery?? 6 years 10 months ago #36851

  • R5lover1
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Thanks for the thread, my mom is very interested in it.

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Mystery?? 6 years 10 months ago #36866

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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ITP does not turn into Lupus, ever. It can be a symptom of Lupus. I was diagnosed with Lupus 8 years after I was diagnosed with ITP, but that is rare. If I were you, I wouldn't worry about it unless you develop other symptoms such as joint pain, muscle pain, fevers, malar rash, kidney problems, rashes from being in the sun, etc.

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