MPN specialist or not?

[johnnyjumpups]

I am interested in hearing from people who have an MPN and who have not made contact with an MPN specialist. Wondering why not?

[Swede]

Hi there, I used to have a brilliant haemo-doctor taking care of me. She was very interested in MPNs' and everything I asked about, she found out if she didn't already know. Sadly she retired last November. I am now under the head of the department but I never speak or talk to him. I have phonecalls from an "associate". She tells me that she always consult the head doctor and yes, she probably do, but I am not too sure my questions or even feelings are treated like it is mine. They are seen as some sort of general answers to mainstream questions. It is too far to go to another hospital so I feel a bit disappointed. But, I cannot do much about it.

[hunter5582]

I have two hematologists, a MPN Specialist and a local general hematologist. I realized I needed MPN expert consultation after my old local hematologist misdiagnosed me. The MPN Specialist meets with me as needed (annually) to review my care plan. She is available as needed through the patient portal during the year. My local hematologist is a wonderful provider who is not by his own definition a MPN Specialist. He handles all of my ongoing care and provides a second opinion on all decisions. It is a very good arrangement that allows me the convenience of someone local with the expertise of a MPN expert who is too far way for routine care.

[Ipadlin]

No, because there isn’t one within easy reach.

[Anouchka in reply to Ipadlin]

Same for me, but after a second opinion I am getting in a couple of weeks, and if still not completely satisfied, I’m contemplating asking the French MPN specialist if he does consults by Zoom….

[johnnyjumpups in reply to Ipadlin]

There is no one with easy reach for me either. Very long car ride or flying and hotel. I am not married and would have to ask one of my kids to go with me. That would inconvenience them and their families.

[nellietheelephamt]

No because I can't even see a general haemo face to face and because of budget constraints within the health care system I have been refused an out of area appointment. I am paying to see a private consultant but there is a long waiting list to see him. My appointment is 6 weeks yesterday and I have hotels and transport booked.

[johnnyjumpups in reply to nellietheelephamt]

I would be doing the same thing as you are, if I were in your situation. I am sorry you have to work so hard just to see someone face to face. I think it will be worth it though.

[Plavers]

on a purely personal basis, I’m so much happier after seeing an MPN specialist. I felt truly like going for an in-depth MOT with the garage checking everything. This check-up spotted I was low in iron, whereas this had never appeared from my three monthly haematology appointments. It’s the relief of finally being handled by experts.

[johnnyjumpups in reply to Plavers]

My doctor has never checked my iron levels. He does morphology, but I don't know what else he hasn't done that should be.

[Badger1]

No I just see a local haematologist same person for 11 years been fine up till now just started rux fatigue is bad he says it will level off so will see maybe it's time to try and find an mpn specialist but don't even know how

[Mostew in reply to Badger1]

Ask your GP for a referral . Find out which is your nearest Mpn specialist or one you prefer ..My GP was very helpful

Good luck. I know not all are as obliging as mine!!

[Mwalimu]

I would certainly see one if I had concerns. Until now (diag in 2011) I've seen local haems - 3 - and found that the questions I asked were satisfactorily answered and treatment has been satisfactory too. Perhaps I have been lucky - the only real side effect of HU for me has been fatigue. I follow the MPN web site assiduously and am grateful to it.

I have never had problems over getting face to face meetings. I am sure Hunter is right when he says patients who use their voice usually get better treatment than those who are always accommodating!

Sallie

[Mostew]

I can see why some people wouldn't due to health or financial difficulties ( travel to, perhaps ,far away hospital)I see one yearly because I'd rather not wait until I really need to . Luckily at present I'm doing OK....

It's like the difference between having a rolls Royce and an old banger!!!!!

[MaggieSylvie]

I've never bothered because I am not overly worried about my platelets. They are never very high, though I take aspirin daily.

The MDS is a different matter. That is true blood cancer with immature haemaglobin cells that rob me of all that haem should do. I am happy with my haematologist who I see every few months (it varies) and she has a team of expert Macmillan nurses behind her. I'd have to travel a tiring distance to find a specialist who likely wouldn't do much more than I've had done already.

[ProudHarry]

PV. See an onc/hem. No MPN specialists close to me. There’s not enough of them here in USA and the ones here are mostly located in large cities.

[johnnyjumpups in reply to ProudHarry]

Very true. Thank you.

[Jamesxyz]

Hi,

It really depends on the Dr.

When I was first diagnosed I had a great Dr who was not labelled as an MPN specialist.

He was great amd everything he told me has proven true.

I would still be with him, but he moved on to a bigger and better opportunity.

I now see and MPM specialist, but the old Doc was still the best.