Wrong diagnosis?

Hi

I was diagnosed with ET in 2012 and have been on hydroxycarbomide ever since. Last year my platelets suddenly plummeted and I had another BM to check for progression. When I finally got the full results, they said that no sign of ET and they think I never had it in he first place. I don’t quite know how to feel. they have done a load more specialised blood tests and I hope to get the results at the end of the month. I have stopped the hydroxycarbomide and already my platelets are at the high end of normal just on the reduced dose whilst I waited for BM results so I expect them to be high again now I have stopped treatment altogether
Has anyone experienced anything similar?

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Hi @shepherd86. Wow, I can’t believe what’s going on for you. It must be really hard to get your head around what is being said.
I hope somebody on here can help with your question. Remember, if you need to talk things through give the support line a ring.
Please keep us updated when you find out more.

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You must be completely confused and I have no idea how you get your head round it all. The wait for your specialised blood test results will probably be the worst and longest time for you @shepherd86
I have certainly not experienced anything similar, I hope others might be able to help.
We are very individual, complex beings.
We are here for you and so is the Blood Cancer UK support line.
Please be kind to yourself and keep posting

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