ET and PV?

[BeckaBoo72]

Hi All

I am newly diagnosed with ET and due to start treatment next week. I’m JAK2 positive and slowly getting my head around this condition.

I’m trying to be proactive but swing wildly from being positive to very scared.

My question is two fold, looking at symptoms of PV it is like listening to me talking to my GP over the last few years. How can it be diagnosed in conjunction with ET? I have not had a bmb yet but need to know what to ask next week at my appointment, and other sensible questions too.

[Ebot]

A BMB will enable your haem to categorise the exact nature of your disease. We’re all different. I started off being diagnosed with an unclassified MPN treated as ET ie high platelets. About four years down the line my HCT started to rise. I had another BMB and was re diagnosed with PV. I had both a high platelet count and a high HCT count. I am now on HU which seems to be impacting positively on all rogue counts!

I would ask your haem to go through your counts with you and explain their diagnosis and reasons for treatment plan - and why that particular treatment. I would also ask about the BMB. I’d also check that you have been tested for all the peripheral blood counts especially iron studies, Vitamin D, cholesterol etc. These can all impact on how you feel

The symptoms for MPNs are pretty wide ranging and can cut across all three types of MPN though may be more prevalent in one group than another. And MF is in a league of its own! So symptom burden may not necessarily indicate ET or PV. And there may be other factors involved. Let us know how you get on.

[BeckaBoo72 in reply to Ebot]

Hi

Thanks for responding, I have an under active thyroid and osteoarthritis in my pelvic girdle, due to heavy bleeding had a partial hysterectomy 18 months ago so my bloods have been all over the place for years, Drs we’re blaming my other conditions for high platelets. I struggle to keep my ferritin levels up even since operation and only was referred when the Dr was saying my platelets were high due to my periods, I said I’ve not had them for over a year, which prompted the Haematologist referral.

I am so fatigued, itchy, blurred vision, dizzy, travel sickness, hearing loss and feeling just under par.

Sorry for moaning just want to feel like I used too!

The more I read, the more questions I have!?

[Sarahjane100 in reply to BeckaBoo72]

Hello. Hope you don't mind my responding to your last post. I am still waiting to be diagnosed with ET. My heamotoligist appointment is next Thursday. I am jak2 negative and awaiting other results. I'm also itchy, very blurry vision and my hearing seems affected too. Is this usual for ET? Sarahjane.

[BeckaBoo72 in reply to Sarahjane100]

I think the advice Maz has given us is sensible, I’m making a list of questions to ask the Haematologist this week, good luck on your journey.

[Mazcd Partner MPNVoice]

hello and welcome to our forum, we can all understand how you are feeling at the moment, it can take a while to come to terms with your diagnosis and how it will affect you, I would suggest that you read as much as you can on our website mpnvoice.org.uk and also have a look at the videos of consultants and patients talking about MPNs, I am sure this will help you. If you would like any booklets let me know at [e-mail]. Best wishes, Maz

[BeckaBoo72]

Thanks Maz, was having a neurotic day, will look at the MPN page again and raise concerns at my appointment this week.