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Essential Thrombocythemia: Making treatment decisions

Blood Cancers & Disorders | Last Active: 5 days ago | Replies (187)
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@rubles

Thank you for your response. I need to ask if there is help with blood disorders because my doctor does nothing so I assume nothing can be done to help. The thrombocytopenia leaves me with huge bruises on various areas of my body but mostly my legs feet arms and little bruises elsewhere. If you can provide any direction I'd appreciate it. I also wonder if the symptoms I'm having are a result of something else but I'm unable to find out as doctors haven't been helpful. The kidney problems also add to it all. Thank you again, Pamela

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Replies to "Thank you for your response. I need to ask if there is help with blood disorders..."
IKEALover | @healedbytheblood0119 | Feb 17 5:18pm

Hi, you need to see a MPN Specialist as they are experts with blood disorders and issues.

Most regular Hemas like mine are too passive and don’t do much bc they don’t know.

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sregiani | @sregiani | Feb 18 9:23am

Agreed! You’ll find better responses w/an MPN specialist. I was fortunate that my primary, a naturopathic MD has a friend who is a Heme/Onc dept head.

In the meantime, you can do an online search for the MPN Research Assoc. They have links to the latest science, and you can sign up for their magazine. See esp the search bar, “Living With…”

Very helpful!

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1995victoria | @1995victoria | Feb 18 12:15pm

I think there is a difference between thrombocytopenia and thrombocythemia. First is low platelets and second is elevated platelets. I think you should find an MPN specialist or at least a hemotologist/oncologist, and have evaluation/consultation, even if you have to travel. Once you get some straight answers, you can have MPN specialist work with your local doctor.....Best of luck.....

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