Eyesight disturbances?

[Hopetohelp]

I have heard that ET can involve eyesight disturbances. Bought new glasses from opticians following eye test and go back tomorrow to have another test as glasses seem completely wrong and cannot get on with them. Opticians will change lense no doubt but concerned that they will still be wrong as they seemed so odd like the ground seeming so far away. I just wondered if anyone else had problems with getting glasses in case there is a connection with ET. Ps none of my family have had this problem and are happy with their glasses from same opticians.

[hunter5582]

I would expect that this is more likely an ocular issue rather than related to the MPN directly, but please do be sure to follow up both with the optician and your MPN Specialist. Here is an article on ocular manifestations of MPNs. ncbi.nlm.nih.gov/pmc/articl...

The short version is that visual issues are typically related to thrombosis and hyperviscosity. There can be both retinal and neurological manifestations. Retinal migraines and visual migraines can occur. There can also be retinal thrombosis, scotoma and other issues.

It always pays to check things out with your care team when you have questions about a symptom. It can be hard to figure out what is MPN related and what is not. Best to collaborate with your care team whenever there is a question.

All the best.

[Hopetohelp in reply to hunter5582]

Thank you for that info

[Snook37]

One of my biggest symptoms was visual disturbances. I am PV JAK2+. I was having scintillating scotomas from time to time and seeing bright spots in vision when I blinked. Still do from time to time now. Ophthalmologist said it wasn’t an eye issue so went to GP and was diagnosed based on a blood test. I still have 20/20 vision thankfully.

[Hopetohelp in reply to Snook37]

I am glad to hear vision ok. So many odd things go on with Mpn’s

[moo196]

Just wondering if these were varifocals?

[Hopetohelp in reply to moo196]

No they were bi focals but when I go in today will upgrade to variables since they are going to have to change the lenses anyway.

[moo196 in reply to Hopetohelp]

Ok. My first pair of varifocals took about a month to get used to. It's a common problem because of the very small area of the lens needed for the right distance. I often felt light headed and "marshmallow floor" until I found the right way to use them.Good luck

[Hopetohelp in reply to moo196]

Thanks for that. Have upgraded to varifocals so no doubt will need to try for a while

[moo196 in reply to Hopetohelp]

Best advice I was given was to move your nose to point at what you need to look at.For computer use I used the clock bottom right of screen to practice with.

Love my varifocals now. Other friends didn't persevere and need various glasses.

Good luck!

[Hopetohelp in reply to moo196]

Thank you for that advice

[nodmeister]

I had the same issue. Mine were reading glasses. As I didn't say they're also for computer and sewing etc no adjustment was made. I did say who reads book positioned at the end of their nose.!!!!!! I had mine checked at Specsavers and they asked all relevant questions and a very different prescription to Boots. Boots did change the lenses but they're still not wearable for long.

[Hopetohelp in reply to nodmeister]

Yes if I am not happy will get second opinion like yourself

[Jenny_F]

Did you have one of the 3d scans to check the health of your eyes? I have it at least every 3 years

[Hopetohelp in reply to Jenny_F]

Yes I did and have a small scar at the back of the eye which hasn’t changed in 3 years. Other than that hopefully all ok except for the narrow angle thing which can cause glaucoma. Pressure fine. Under morfields for that but at least 18 months since last appointment due to Covid.

[Hopetohelp]

Just an update, new lenses being fitted with reduced adjustment for stigmatism . Hope they will be ok. Thanks for all your help everyone

[Windy51]

My eyes have gone cloudy and I have floaters in my eyes I think it’s from ET

[Hopetohelp in reply to Windy51]

I have loads of floaters particularly in left eye. Continually having to blink to get them to move. Feel sure connected with ET although seem more since taking aspirin. Optician said nothing I can do about them. Will ask at my next visit to Morfields, whenever that will be.

[Windy51 in reply to Hopetohelp]

I was told the same