MPN Specialist

[Juliet46]

I have an appointment with an MPN specialist on Thursday rather than my usual haematologist I am a bit stumped on what I should be asking him. I haven’t had a BMB so I will ask him about that but has anyone any other suggestions? My platelets seem to be coming down ok. Now down from over a million in January to 480,000 last month.

Thanks for any ideas!

[socrates_8]

Hi Juliet... :–)

You could ask him from me when he will be visiting Australia... (?)

As we do not have any dedicated MPN specialists here, you guys are so lucky by comparison...

AsI am not aware of which MPN you have I am not sure about what questions you might want answered etc...

Platelets, are still a problem for myself, even though I am now considered as MF I still have very stubbornly high platelets, and usually around the 1M mark... My main concern is that I will not have another TIA, (minor brain stroke), as I have already had two, and the thought of becoming permanently incapacitated to me is a much greater fear than shaking off this mortal coil, so to speak...

In any event, best wishes, and I am sure you will think of a few questions in due course...

Steve

(Sydney)

[Juliet46 in reply to socrates_8]

Thankyou for your reply! I have ET. I do think I’m quite lucky compared with a lot of people with these MPN’s. I have never had a stroke or anything else related to this condition.

Good luck to you also !

[Timjonze]

Hi Juliet. I don’t know your condition so can’t advise specifically but if there’s nothing bothering you particularly (other than the BMB which you should definitely ask about) I’d probably just ask for them to review your case so you have a second opinion from a specialist. Will make you extra confident that you’re on the right treatment plan and have the right diagnosis. Sounds like you’re doing well in the meantime!

[Juliet46 in reply to Timjonze]

Thankyou, yes that’s what I’ll do !

[Wyebird]

So glad you are responding to treatment. An MPN specialist will understand how your symptoms impact on your quality of life far more. So glad for you.

[Juliet46 in reply to Wyebird]

Thankyou!

[ksos]

Hi -- lucky you, to have an MPN specialist. That's really great. I suggest asking about side effects like fatigue and headaches, why it happens and what helps, and if supplements are helpful for them. Also, prognosis -- how does the disease progress, any markers to watch for that indicate any kind of change in the disease. One question I always ask my doctors is "What should I be asking that I haven't?" They seem to like that and I've almost always gotten some information I wouldn't have otherwise. Good luck, and let us know what you find out.

Kim

[Juliet46 in reply to ksos]

Thank You. I’m going to write out a list of questions based on people’s suggestions. Very grateful x