Hi I’ve had a letter today which has been sent to my GP (I got a copy of this) so wondering what’s it about as I don’t really understand… I’m still awaiting a date for a scan on my abdomen along with blood tests results from all the bloods test they did… so just wondering if this is something to be worried about or is this a normal letter to let the GP know what’s happening… I don’t understand the plan section as I’ve already had these test done ?? Please help… thank you❤️
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Hi @MissB.
My consultant always sends a letter to my GP following my appointment, worded as yours is, perhaps that is what this is?
Have you got a clinical nurse specialist you could contact to put your mind at rest?
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Yeah this is the letter they sent to my GP I’ve just got a copy of it! Haven’t a clue what it means and still awaiting date for scan on belly and results from all bloods, it’s been 16 days since my appointment so not sure how long things take and got this letter so confused xx
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Hello @MissB. I can understand your anxiety. It is the waiting and uncertainty that is so hard. The only light I can shed on your letter is that the blood tests listed are all tests to see if you have a faulty gene. The JAK2, CALR, MPL etc are all genes they test for when investigating for Myeloproliferative neoplasms (MPN)’s. I am CALR gene positive and have the Myeloproliferative neoplasms (MPN) myelofibrosis. It is a way of doctors classifying any haematological disorder you might have. I am just a haematology patient and not a doctor but I hope this helps. It sounds like your doctor is being thorough in trying to rule out things one by one. I wish you well. Willow x
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Hi @MissB you are obviously concerned and confused so perhaps the way forward might be to make an appointment with your GP and discuss all your questions and the way forward.
Please do let us know how you get on.
Be kind to yourself and look after yourself
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Thank you for responding, I’ve already been tested for all of that 16 days ago, so does that mean I’ve got to have it again do you think or is that just saying I’ve had it done, I don’t know who to talk to about the results do I just ring up the clinic I went too? Thank you
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Thank you Erica - I’ll post updates when I know! Hope your well xx
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Hello @MissB. I can’t be sure but I guess the letter is informing your GP that the tests have been done. Don’t think you would need them done again. I know these genetic tests take longer than some standard blood tests. I would either contact your GP or the clinic you attended. Thinking of you. Let us know how you get on. Willow X
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