I have today received a copy of a letter that was sent to my gp after my clinic appointment for the mutations.
It was sent 3 weeks after. And added on it says
Addendum
NGS Analysts : No evidence of a clinically significant variant in targeted regions of JAK2 CALR AND MPN.
So it seems they were back before 3 weeks and the hospital have known since just over 2 weeks from my having the mutations tested. Does that sound right. 2 weeks for results?
And it states that there is no evidence whatsoever of my going to haematology in 2008 2009.
I swear to god this is making me feel crazy now. Does it seem that I'm all clear. It reads to me that 2 weeks after having the tests they came back ok. And this was during the Bank Holidays too.
And it does state that she did them because for years I had been a member of an mpn site!!!!And she wanted to only do them for my piece of mind. And she says she had said they were most likely reactive. Which was not true. She actually said that they were not looking reactive.
Now I remember talking to the nurse from lymphoma clinic and as I was talking to him he seemed to be trying to tell me that these tests cannot be ordered routine. He was also saying that even when ordered they sometimes won't do them. I need to see evidence.
I've just rang reception at hospital and was told she added the results Saturday so that's cleared that up. They are NEGATIVE. WHOOOOO.
sorry but I have to leave you all now. But I thank you all for your support through this all. My platelets and my whites are just normal for me again and being high is normal . And reactive to something. But it's not an mpn
Still have to have my follow up appointment on Wednesday but its just with someone other than an haematologist. Just to sign me off so to speak. And I said about having covid and she said covid doesn't change blood results at all.
Extremely Vulnerable letter
How to get shielding letter (scotland)
Mayo Clinic Received a totally different approach to managing my MPN
letter from health board Scotland
