MPN Specialists in N Ireland

[rearwindow]

I have had ET for 4 years and am on hydroxycarbamide. My main symptom is v bad fatigue ( which in turn affects my mood and has led to depression. My haematologist insists that that neither the ET nor the meds contribute to this. I wonder if anyone could recommend a MPN specialist in N Ireland.

Diane

[fee13]

Sorry I'm in New Zealand so cannot recommend anyone. All I want to say is ditch this haematologist as fast as you can, they don't know what they're talking about.

[Mackydee123]

Hi rearwindow,

I’m with Professor McMullan, City Hospital. Had a Haem and when I asked for a medication review I was moved to the Prof’s patient list. She’s ace! I suffered from fatigue too, felt like I was in a bubble and really dumbed down which was not helping as I’m a full time worker and a law student. I checked with the Prof about taking magnesium but she said she would prefer me not to while starring new meds but was ok with high dose Vit B12 which I take every morning and it really does help.

Good luck and keep in touch

Kerry

[Not2bad]

Hi I'm with Dr Arnold in the Belfast City Hospital and have to say that she has been excellent. She has listened to my tales of woe about the fatigue and as a result I have been put on a low dose of interferon. This has really helped me.

Best of luck

Finbar

[Bridie123]

Hi everyone, my fatigue is dragging me down, no one accepts it last of all the experts. My point is, if only we new exactly what we could experiment with in the vitamin and mineral world because I have been told not to take vit B12 and do take magnesium daily!....

[Wyebird]

I agree with you my fatigue sends me into a deep low mood. I will definitely disagree with your haemo. I was collapsing due to hypoventalation syndrome.( amber lance called quite a few times) that was prior to diagnosis. Before ET my body was coping but et stopped me from coping.

[rearwindow]

Thank you to everyone who replied to my post on fatigue and MPN specialists in N Ireland. Much appreciated.

[stillkicking]

Hi Diane,

Just wanted to send you best wishes. I am having rather similar struggles with Hydroxyurea myself, and know only too well how frustrating it is to battle with fatigue and the depression of being so debilitated... then having the medical people try to say that the fatigue is due to the depression. It is all chicken before egg, cart before horse nonsense and very difficult to deal with sometimes.

I do hope you are able to get a good specialist, or more helpful haematologist, who really understands these things. In the mean time please realise that you are not alone, and others on Hydroxyurea also do experience this in spite of what the "experts" say!

Kind Thoughts,

Peter

[rearwindow in reply to stillkicking]

Thankyou Peter

[TTA_]

I understand your need for a better specialist. Yours is not showing their competence when they claim that the staple symptom of MPNs, fatigue, is apparently not a symptom of MPNs. Similarly, HU is known to cause fatigue in some patients via lowering red blood counts and not only. You deserve a good specialist.

This is a study on symptoms of MPNs you can use when interacting with your hematologist, and the authors quite clear you do not need to be in high-risk group to experience serious and debilitating symptoms:

"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%), inactivity (60.5%), headache (48.3%), concentration problems (61.7%), dizziness (55.2%), numbness (61.3%), insomnia (65.4%), sad mood (62.7%), sexuality problems (57.9%), cough (46.4%), night sweats (56.4%), itching (52.6%), bone pain (48.5%), fever (20.2%), weight loss (34.2%), and impaired quality of life (84.2%)"

"Notably, neither PV nor ET clusters differed by risk scores suggesting symptomatology likely presents independent of disease stage and risk scoring tools should not be applied as surrogate measurements of disease severity."

ncbi.nlm.nih.gov/pmc/articl...

Also, for catharsis, I like this study:

"Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed."

onlinelibrary.wiley.com/doi...