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I feel like I'm the only one with Cyclic ITP

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13 years 5 months ago #29348 by kaylas
I feel like I'm the only one with Cyclic ITP was created by kaylas
I've had ITP for 14 years now with my platelets dropping as low as 1. it wasn't until 4 years ago that my hematologist told me that I now have Cyclic ITP. It's when my platelet levels drop down very fast whenever they want then rise again within a couple days. Every month almost like clockwork now they drop down to 4 it's so weird that its always usually 4. My gums start bleeding, I get blood blisters on the insides of my cheeks and on my tongue, patechia, and bruising. Every hospital I go to it seems like they want to learn off of me more than treat me. Always 10 doctors asking me the same questions over and over and over again. its so annoying!!! :angry: and frustrating !!! can I please talk to someone else with this disorder please ? anyone? :( :( :(

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  • 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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13 years 5 months ago #29350 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
There is another person here who has cyclic ITP, but I can't remember who it is. I'll think about it and try to come up with the name.

How long do your low counts last?

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  • 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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13 years 5 months ago #29351 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
Here's an article:

www.gundluth.org/upload/docs/Archived/Thrombocytopenia.pdf

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13 years 5 months ago #29352 by kaylas
Replied by kaylas on topic I feel like I'm the only one with Cyclic ITP
:Thank you that article was very interesting and helpful. I would still really like to talk to someone else that's like me :(

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  • 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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13 years 5 months ago #29353 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
I'm trying to remember. I did a search and came up with a thread with the persons name, but when I tried to get on the thread, it had been archived and was not accessible.

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13 years 5 months ago #29362 by meredithjane
Replied by meredithjane on topic I feel like I'm the only one with Cyclic ITP
Sandi & Kaylas,
I think it is snowgoose (Vanessa) from New Zealand you are thinking of.
mj

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  • 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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13 years 5 months ago #29366 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
No, it wasn't Vanessa. I know her fairly well. I'm thinking of someone that I don't know.

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13 years 5 months ago #29372 by tamar
Replied by tamar on topic I feel like I'm the only one with Cyclic ITP
I think it was Sneakers (or something close to that).

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  • 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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13 years 5 months ago #29374 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
Hey, thanks for the tip! I'll search that tomorrow.

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13 years 4 months ago #29727 by kaylas
Replied by kaylas on topic I feel like I'm the only one with Cyclic ITP
thank you everyone

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  • 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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13 years 4 months ago #29730 by Sandi
Replied by Sandi on topic I feel like I'm the only one with Cyclic ITP
I did look for Sneaker and can't find that person registered to this site. It may have been the old Forum which was wiped out a year or two ago. Sorry, I tried.

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