Peripheral Vision Loss

[EllenKay67]

Does any one have peripheral vision loss; not related to Glaucoma or any other eye disease but from ET??

Thanks for your thoughts,

Ellen

[PhilReade]

Hi yes I’ve had vision loss in my left eye 75% in September temporarily for about few minutes

But I also have ongoing blurred vision then in October I had a blackout I’ve had MRI brain scan and I’m having tests at Manchester eye hospital nothing has shown up on scan blood tests ecg

I have E/T on 1500 mg day of hydroxycarbamide asprin 75 and Clopidogrel

[EllenKay67 in reply to PhilReade]

PhilReade thanks for your reply. I am on HU 500 mgs 3 times a week & Clopidogrel 75 mgs also. With all the work up my ophthalmologist have done ... nothing is showing up. Now I am scheduled to see a neuro ophthalmologist next month. So far no explanation... but doc do say before I left her office ... it could be related to the “bone marrow cancer”. So far, I have been researching but I can not find a answer ...

Hope you are doing better ... Ellen

[piggie50 in reply to PhilReade]

Hi,

I am interested that you take both aspirin and clopidogrel. Can I ask why this is?

Thanks

Judy

[PhilReade in reply to piggie50]

Hi Judy

It’s because of a recent blackouts they can be linked to E/T I ended up admitted to hospital

The TIA unit advised my Haematolygist to put me on them

[Mica11]

Hi Ellen, Prior to my diagnosis of ET in October last year I had various visual disturbances, peripheral and also sometimes central, it lasted for varying amounts of time and usually when I was sitting quietly in an evening watching a bit of TV or trying to read. I had also had an MRI on my head and a cerebral angiogram earlier last year while a diagnosis was being sought with nothing untoward reported. I was advised after waiting on referal to Haematology to take 75mg aspirin daily. I have not had vision problems since.

Grace.

[EllenKay67 in reply to Mica11]

Thank you, Mica11 for your reply.

I am so glad you are no longer having any visual issues & the aspirin has helped you.

What was your platelets running around that time, if you know?? I am 67 & high risk cause of my age & cardiovascular risks. My platelets stays around 450-500 ... but b/c of risk I take HU & allergic to aspirin.. so I take Plavix( Cloopidogrel). I was diagnosed las March.

Thanks again for your reply & I am glad you no are having any issues with your eyes.

Thank you again for your reply, Ellen

[Mica11 in reply to EllenKay67]

I was in the upper 700's before any treatment and during the first month on 500mg Hydroxy per day and my platelets still increased slightly, so now on 1000mg per day and it seems to be doing the job.

Such a shame you have an aspirin allergy, I feel sure it was taking the aspirin that stopped my eye trouble but if Plavix does the same job then I would have hoped, if it is thinning of the blood that stops it, then it would have worked for you. Our condition and our symptoms and treatments can be such a puzzle sometimes and answers don't always come from the so called specialists. Keeping everything crossed Ellen that you find something that works for you, it is quite unsettling when it happens. Grace.

[EllenKay67 in reply to Mica11]

Thank you so much, Grace . It is so unsettling... just hoping that my vision calms down.

Glad the aspirin has helped ❤️... yes you are so right .. our specialist don’t always know the answers. This is such a complicated disease but I am so thankful for this forum that helps us communicate with each other.

Please have a fantastic day!!

Ellen

[Mica11 in reply to EllenKay67]

I agree about this forum, you are never alone. Enjoy your weekend and keep smiling that lovely smile! Grace

[EllenKay67 in reply to Mica11]

Thank you, Grace ... yes enjoy your weekend also 😊

[Mwalimu]

Last July, having been working at the computer for many hours per day and for an extended period (about 2 months), I lost some of the central vision in my left eye. It improved a little over the next couple of weeks so that I now have about three quarters of the total vision in that eye.

I saw two consultants who came to the conclusion that there had been a blockage and some slight bleeding which had damaged the head of the optic nerve. In the absence of any other factor they could identify, it was decided that the most likely explanation was the effect ET had had on my blood.They felt the most sensible course was to look into my blood counts

At the time this happened my platelets were about 509. So, I contacted my haem asking permission to re-instate the higher dose of HU which had been changed about three months earlier. When my platelets fell to 345, the haem suggested re-instating the reduced dose but monitoring me more frequently ie every two, not three months. On my last visit, the platelets were 385 but the haem felt I should remain on the reduced dose for at least until the next visit.

I, of course, am worried it will happen again! So, I now work no more than three hours at a time - fortunately I can because I am retired.(The optician says my brain has/is adjusting well to the change but I find it quite inhibiting. I've bought a special daylight lamp recommended by the RSB and that helps.)

Interestingly neither of the eye consultants seemed to have heard of ET, although when I explained what it was, they seemed to think that it was the most likely cause but the haem said it was highly unlikely that there was any link between the 'eye event' and my ET. Off my own bat, I've decided the most sensible course of action is to reduce the hours of reading and computer work I do at the same time as watching my platelet count which, of course, I had been doing anyway.

I'm not sure this extended 'reply' is of any use to you but it may help someone. Sallie

[EllenKay67 in reply to Mwalimu]

Oh, Sallie, thank you so much for replying. And yes, oh yes, your reply does help! ❤️

I have had numerous eye tests & work up with my ophthalmologist. I do have dry Macular Degeneration, but that affects the central vision ... but that is stable .

But I have no other issues showing up on the tests to explain the peripheral Vision loss. My optic nerves look good & she did like an eye Angiograph... might be work spelling .. but it was done with dye injected into my arm. It only showed up the Dry Macular Degeneration, no leakages of blood, & all the blood vessels plus circulation of blood flow looked good.

Now next month I am going to see a neuro ophthalmologist.. but at end of my visit on Monday she said that it could be related to my “bone marrow cancer.”

I am researching every article to find out if this is a possibility.. please if you run across anything please inform me.

I see my hematologist two days before I see the neuro ophthalmologist... & I will ask her about this. Again thank you so much for your reply.

I am 67 & my platelets are around 450-500 ... with HU & Clopidoogrel (Plavix).

Again thank you so much, Ellen

[Mwalimu in reply to EllenKay67]

Let us know how you get on ....... I'll certainly let you know if I find out anything more.

Sallie

[EllenKay67 in reply to Mwalimu]

Yes I will ... thank you Sallie.

My ophthalmologist is a retinal specialist .. I forgot to add.

I won’t see a doc till middle of February.. & I will keep everyone updated.

Sallie, have a great weekend 😊

[Poppy112]

I have been referred to an ophthalmologist after a routine eye check last October due to some problems with my peripheral vision.I was diagnosed with ET/PV in December and I was wondering if there is a link with the two. I am keen to know any thoughts and plan to ask my consultant at my next appointment. I see the ophthalmologist in a couple of weeks.

[EllenKay67 in reply to Poppy112]

Hi Jen76... thank you for your response.

Do you know your lab values?? What kind of problem are you having with your peripheral vision? Are you on medication for your MPN, if so what? Are you taking aspirin??

Oh I am so sorry for all the questions, hope you do not mine.

I was diagnosed last March 2017 & when I took my vision test for my driving licenses I was having trouble with the peripheral part of the test. .. this was in May.

Since that time I experiencing loss of my peripheral vision ... I walk into people in a crowd, trip over things in the floor & also at times walk into furniture. But I am learning to compensate with extra use of my central vision.

I do not know if there is a link between ET & vision loss. I am trying to find out .. I have been researching all the articles I can find. My retinal specialist suggested my loss could be related to my “bone marrow cancer.” She has not found any thing wrong with my eyes, optic nerves, blood flow & retinal all are normal. She is sending me to a neuro ophthalmologist next month.

So I have no answer but plenty of questions. 😢

Please keep me updated on your progress & what your ophthalmologist has to say.

Thank you again for replying ...

Ellen

[Poppy112 in reply to EllenKay67]

Hi my platelets at diagnosis in December were over a million I was on Hydroxy for 2 weeks and they came down to 870 but was changed to interferon due to my age, I am next due a blood test on Friday to check my current levels. I am also on Asprin. I hadn't noticed massive vision changes but my optician was a little concerned about my peripheral vision on testing, only symptom I noticed is I seem to struggle more driving in the dark with oncoming headlights etc.

Will keep you informed after my appointment I never linked the 2. I never had some many appointments in my life and it just got me thinking this vision change may be linked to my MPN.

Best wishes

Jen

[EllenKay67 in reply to Poppy112]

Thanks Jen for your reply.

Please keep me updated on your progress. Hoping your numbers are great on next lab draw.

I am taking HU 500 mgs 3 times a week. Plus Plavix, I am allergic to aspirin.. Hematologist trying to keep my platelets between 400-500 b/c of my age I am high risk.

Let me know if you discover a link between MPN & vision issues.

Have a great weekend,

Ellen