Hello,new here.

[Ericisadogg]

My husband was diagnosed with ET and PRV in his mid thirties although his symptoms had been dismissed for years as anxiety.He's JAK2 positive and has been on Hydroxyurea for ten years now.

He is currently experiencing some worrying symptoms and I've joined looking for support and advice.

His liver is struggling, worryingly so and yesterday we noticed some jaundice so he's back on the investigation roundabout.My other worry is that he is increasingly forgetful and confused.

His diabetes is uncontrolled at present, he's anaemic with large red blood cells but at least his platelets are only low abnormal at present ; )

Has anyone else experience of any of these aspects who could offer advice?

[Mazcd Partner MPNVoice]

Hello and welcome to our forum, I am sorry to hear that your husband is having problems with his liver etc, I hope it gets sorted out for him, I am not surprised that you are worried and wanting advice and help, I am sure you will get lots from the lovely people on this forum, and of course from the doctors looking after your husband. Best wishes, Maz

[jillydabrat]

You certainly are going through a worrying time. I can't help with your query I am afraid but please keep on checking as someone on here will be able to help. All I can say is that confusion, slurring of words and not being able to find the correct words are issues that a number of people seem to experience, including myself. I am JAK2+ PV and I get terribly frustrated at these symptoms. Don't pass them off as part of his illness though as they should still be investigated. I hope you find your answers soon. Best wishes, the brat x

[Edgbastonian]

Hello, I must be worrying for you to have extra problems cropping up for you both to cope with and I do hope you can get some help through your Haemo.

I am fairly new on here too being diagnosed PV R JAK2+recently after many years of unexplained problems including "losing words" and hesitancy in my speech and occasional confusion being dismissed by my docs as not to worry about(before Diagnosis). It was a relief to hear that these symptoms are common with these conditions and that I am probably not losing my marbles. AT least now I can explain if I stop in mid sentence or bring out the wron g word in full flow. I think the important thing is not to let fear of embarassment stop enjoyment of social life.

[Loubprv Volunteer]

Hi,

Just to say welcome, you're in good company! Personally I think we should all live in one big MPN commune - you wouldn't meet a nicer bunch of folk anywhere.

I can't offer any advice except be sure and attend an MPN voice forum ( see mpnvoice.org.uk to find locations and dates) where you will have lots of opportunity to ask questions of other haematologists and patients. Always uplifting occasions.

Not all doctors really understand the worrying and often unpleasant symptoms of an MPN meaning not all patients get the help/ advice sympathy that they deserve.

There will be help for your husband, even if you have to make a one off appointment with another haematologist ideally specialising in MPNs. Don't give up - you'll get there.

Louise

x

[sogtyme]

Hi ericisadogg, I have the jak2 going on 9 years now, I also was a little off with the liver actually a lot off all the counts were in the hundreds, doctors were noo help as they suggested more drugs! I have a chinese herbalst who suggested LEGALON it is an extract of milk thistle MZ80 it is clinicaly proven to support liver health. I have been on them for 1month plus a week 3 caps a day and my liver enzymes are all normal except one which went from 300's down too low 100,s normal being between 30-40 so expect to be there by next blood test. I also went very clean diet no package foods, no alcahol lots of fish chicken, and beef everything organic no hormones and definetly no processed meats! I also only do 1 cup coffee a day then it is chai or detox tea. Good luck I hope this helps, remember everything you put in gets filtered through the liver! good luck and be positive