ET and Eye Problem

[Mwalimu]

This is a follow-up to an earlier post abou1-2 months ago. The consensus of the eye specialists that I have seen is that - in the absence of any other cause they can find - the partial loss of vision in my left eye is the result of damage to the optic nerve because of capillaries being blocked and a bleed probably as the result of my blood condition.

Although it has improved, the sight is very much down and is not expected to improve. They say there is no treatment and nothing I can do to prevent it happening again. Since my platelets were roughly 509 at the time, I was spending long hours at the computer and was under considerable stress, I have decided to limit my time on the computer or reading to 4 hours maximum a day and avoid anything stressful that I can.

I will talk to the haem about the dose of HU next week but, the last time we spoke a few weeks after the loss occurred, she said that she felt it unlikely the platelets were a contributing cause since they were so near 'normal'.

Any advice would be welcome ..... Sallie

[Bridie123]

Hi sallie, the numbers might be normal but the condition of them isn't normal, they are sticky ,and some are a irregular shape .

Regards Carole ☺

[Cmg5935]

Hi Sallie, very sorry to hear of your vision loss. I was recently diagnosed with ET & Mild MF. I don’t have any particular suggestions but I wanted to share that I also have been having vision issues. I’ve scheduled an ophthalmology appt because I’ve noticed that my vision seems to fluctuate fairly regularly. I’ve also had a sudden decrease in my night vision which includes haloing of oncoming headlights. It’s incredibly frustrating because I have found there are times I have to ground myself from driving after dark. My personal opinion is that your eye specialist is correct.

For months prior to diagnosis I have had the vision change as well extreme exhaustion, even changes in my hearing. The great frustration is that the haem says that she doesn’t think it’s related to the ET, though so many on this forum have experienced the same issues.

So either I’m spontaneously falling apart or they are all related to one condition...ET.

Christina

[wormwood]

I too had a problem with a venous eye bleed in my right eye in 2014

Basically had a lovely light show then went totally blind!!! Lots of eye clinic spots then an op. They put it down to strain as in a sneeze. Although that didn't happen. My count was 833 got sent to hesmotology was diagnosed with e.t Jak2 +.... I think it was the mpn. Sight not as good but better than none.

[Sksarj]

Hi Just read your post Sallie. Would like to add that when I informed my optician,(who is brilliant), I had ET, his reply was "anything that affects the blood affects the eyes".

[yarrowleaf]

Hi sallie !! I've got eye problems too. Not the bleedings, but a sort of vascular pressure-- like they are "swimming".

The problem with most of the doctors is that they are squeezed between us and and the medicine manufacturers. Our blood platelets are kept "constant and low" in an artificial way which can never be even slightly called Normal and the medicine intakes/injections cause bi-processes which are creating havoc in our blood. A bit the same as Bridie123 sais.

Your visual impairment could be due to vascular/fluid- pressure (like mine) but I did a thing which helped and which is harmless-- I took antihistamine for a while-- and that made it much better. Apples and black tea are also diuretic !!

Hope this could be of ever so little help.

Me : ETjak2. On (every 3rd week) Pegasys 45mg on 3rd year.

Good wind yarrowleaf

[Mwalimu]

Thank you everyone. Am off to buy apples and will even try the black tea!