I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily disturbances in the periphery (bottom right) of my vision. It's different from the 'classic' scintillating scotoma (visual migraine/migraine with aura) in that it doesn't move or increase in size but stays in the periphery of my vision and appears much more frequently. (I have experienced many scintillating scotoma previously- it was a key symptom that led to my diagnosis but much improved since I've been taking aspirin). I sometimes also get blurred vision.
I am short-sighted and have a strong family history of glaucoma though my (non-specialist) haematologist said she didn't think there was any link with MPNs.
The optician says it doesn't fit the description for detached retina, and it has been going on for some months now without a rapid worsening.
It would be great to hear from anyone who has experienced anything similar.
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junebuggy
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Hi Junebuggy. I have also experienced the same visual disturbances with ET and now PostMF. I have found that they typically occur when my platelets are around or over 1000.
But I have also experienced them when my platelets have been lower. Which I have discussed with my specialist and I questioned whether it could be related to cellular proliferation?
I have not been able to find any answers or a prevention or cure. All I know is this is not an uncommon thing for ET patients.
In conjunction with your doctors learn as much as you can about your visual disturbances and when it could be a sign of something more sinister. Learn what the signs and signals are of a typical visual disturbance and with your doctor identity the signs and signals that are not your "normal" experience and identify a plan as to when it's an emergency, requires a no urgent appointment or something just to watch and wait.
Also be care when driving at night as I have found it increase the amount of light flare which can make driving dangerous.
I also suffer with blurred vision especially at night and in the morning. I asked the consultant and he said it is part of the fatigue side effect of the disease. I have MF 2 and get regularly checked by an optician. I have had two vitreous detachments over the last 7 years and also needed to have cataract surgery on both eyes. I hope for you it is nothing serious and perhaps also a fatigue related issue.
Hi, I use to have vision disturbance but I was diagnosed and treated for papilledema. Which is back to nearly normal and I my eyesight is good. Wishing you well.
Hi! I have MPN ET Jak2 positive. my eyes are a real headaches to me. I am not allowed to drive have to rely on my daughter. I have macular degeneration, blepharitis and cataracts. The options said I was greedy, as there is three things that you get wrong with the eyes and. I have all three. Ha ha. I take hydroxy carbamide, aspirin plus lots of tablets and eye drops. Silent migraine is with aura and feel faint regularly as am anemic . I'm on the NHS for cataract operation but been on it sometimes. I have two pairs of glasses so when I have the operation is won't cost as much. But I am not wearing any at moment as face on the page. Can't see. Can't see hand in front of my face so no help to my daughter but just have to wait.
Hi, I was diagnosed with PV in March last year and I initially had problems with blurred eyesight which settled after a couple of months. But while I was on holiday last August I suddenly lost my sight in one eye, this lasted about 3/4 minutes but was very frightening because I was driving at the time. My Haemotologist ordered me a head scan which showed nothing and the Optician said everything looked fine and it was probably a clot passing across the back of my eye ( which wasn't exactly reassuring).
I have not has anymore problems with my eyes but at the time my blood results were all over the place so that could have caused a clot. I am taking Hydroxy. and have many side effects but my Haematologist insists it is not the medication. Good luck.
I have ET Jak2+ for 2 plus years. Did not get vision issues but as soon as I started peginterferon my hematologist advised to add eye doctor to ET care team to get checked every 6 months. There can be a vision side effect from this drug. Eye doctor also noted, again, that age related issues can occur regardless of ET so every 6 months is a good thing for me in general. A side note, two years before the ET diagnosis I had cataract surgery. The surgery was fast and easy. The replacement lens have worked beautifully. Hoping anyone affected by cataracts has a positive experience with replacement as I have had.
I have experienced visual disturbances, but they are not related to the MPN. I have experienced acephalgic visual migraines and convergence insufficiency as a result of brain surgery. I also have had two retinal tears and have ongoing vitreous detachments. Floaters are on ongoing issue.
Suggest that you need a more comprehensive evaluation by an ophthalmologist to evaluate your visual disturbance. It is possible that you would be referred to a neuro-ophthalmologist f the issue if thought to be neurological rather than related to the eye.
Your MPN care team does need to know wince there are some MPN-related visual disturbances possible, particularly in the retina. I would be more suspicious of something related to other things, but would not make any assumptions.
I just wanted to mention, since you indicated a family history of glaucoma, that glaucoma can cause peripheral vision loss, and you can have glaucoma with normal intraocular pressure. You may be aware, there is a test to check your peripheral vision. My mother had glaucoma, so I am watched closely by my Opthamologist, although no symptoms to date.
Like you, the ss I used to get before being put on aspirin and Peg alpha 4a in Feb this year has virtually stopped. The exception is the occasional (but not increasing in occurrence) and partial blanking of vision in my right eye shaped like a rugby ball. Unlike the SS that was a moving expanding spiral, this stays in one place and can last up to a few minutes.No glaucoma history but had my cataract replaced in right eye 2016 and left eye due in August. Opthalmist surgeon said unrelated to any blood disorder and was due to my natural ageing.
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