PV Jak2

[Sueworthington]

I was diagnosed in April & have had venesection almost every week until 3 weeks ago, having blood tests again this week & seeing the consultant on Thursday...this past week I have become very tired & experiencing disturbed vision almost daily...has anyone else experienced the disturbed vision, or should I see my normal GP

[Rachelthepotter]

Why risk it. Moorfields the eye hospital in London has a walk in service no GP referral needed Maybe other eye hosps do too.Lots of love.

[Sueworthington in reply to Rachelthepotter]

I live in north England, will check with consultant on Thursday , thank you x

[jane13]

if the vision problem is a "scintilla" - a half circle of flickering diamonds - then I think it's fairly standard for high HCT. Anything else certainly worth a check. In any event ask the consultant next week?

[Sueworthington in reply to jane13]

That's exactly what it is, so will definately mention it...thank you x

[shiftzz]

Sounds like Retinal migraine (ocular migraine) is an eye condition that causes brief attacks of blindness or visual problems like flashing lights in one eye.

These episodes can be frightening, but in most cases they're harmless and shortlived, and eyesight goes back to normal afterwards.

Some people get retinal migraine every few months, although the frequency can vary.

Retinal migraine is a separate condition and shouldn't be confused with headache-type migraine or migraine with aura, which usually affects the vision of both eyes.

nhs.uk/conditions/retinal-m...

[Sueworthington in reply to shiftzz]

Thank you for your comments

[mhos61]

Yes, I had two episodes around three weeks ago on successive days!

I rarely experience these episodes once or twice a year at most, and my husband and a friend also experience them - so I never related it to my MPN. Thinking differently now though.

I've been diagnosed with ET for around eighteen months - but have suffered these episodes maybe as far back as twelve years. A bit concerning!

For me, it's pretty much like Jane has explained with 'shimmering' thrown in. It doesn't last too long, maybe a few minutes and clears quicker if I lie down with no pillow.

Mary x

[Sueworthington in reply to mhos61]

Thank you for your comments

[Paul42]

I agree with what others are saying its quite common with these conditions, but I do think its made worse when we are tired/fatigued. I also think drinking caffeine can bring them on when tired.

This is my experience anyway.

[Sueworthington in reply to Paul42]

Thank you for your comments

[Cecilie]

I've had these for years as well, but they stopped completely after my platelets were reduced to around 400 with interferon. It must be connected, I think.

[Sueworthington in reply to Cecilie]

Thank you for your comments

[Jacqx17]

Hi Sue,

I was diagnosed PV Jak2+ in January, and one of the symptoms which led me on the path to my diagnosis was intermittent blurred vision, (like if you rub your eye and you momentarily your vision is off), sparkly lights and terrible fatigue.

I've had quite a few Venesections and now that my hct level is coming down I have less of the visual disturbances, not gone entirely but less.

I have also suffered with monthly sometimes weekly migraines with lights etc for about 35years the type that put you in bed for days, and strangely as my hct has come down I haven't had one migraine!

Still have the fatigue but my haematologist says visual stuff and fatigue all to do with PV.

You should still get it checked out but I do believe it's part of the PV course.

Jacqui🤗

[Sueworthington in reply to Jacqx17]

I am sure it's connected Jacqui...after I had had 9 Venesections I felt so much better & no "eye" problems, it's 4 weeks since last Venesection & the fatigue & eye thing have returned this past week, so I'm guessing I need more blood taking 😂

[Jacqx17 in reply to Sueworthington]

Exactly the same with me Sue, I'm down to one every 6 weeks now, but I start feeling I need that date with Dracula usually the week before I'm due. Its amazing how good it makes you feel afterwards though! 😄 Just wish it lasted longer.

[Sueworthington in reply to Jacqx17]

That's so funny, we call it going to see Dracula too🤗

[Michael56]

Hi Sue I went through the same things 12 years ago, it does get better once your body adjusts itself, keep smiling x

[Sueworthington in reply to Michael56]

Thank you Michael x

[Betsywest]

Hi Sue, I've suffered badly with visual disturbances which led me to go to the gp in the first place before I was diagnosed... my HCT has come down to normal levels now about 6 weeks ago following many venesections too & my vision has definitely improved but not gone completely. I mentioned this to my haem last Friday but he said it could be something else causing it as my levels were now normal but I'm still sure it's the PV as the gp checked me out for just about everything at the time I also went & had an eye test too which didn't show up anything... I think I just have to get used to it but as I say it's definitely lots better than it was! x

[Angelinagaffer in reply to Betsywest]

Yes I have had the same problems ,I was diagnosed in January and in the last month my bloods are near to normal and I feel so much better, my eyes, ears and head are so much clearer and pain free.