ET and double vision?

[vivihtp]

hi...i’m vivi with ET. i’ve been on anagrlyde on AM and HU on PM...i have a sudden double vision attack for about 10 minutes in three consecutive days...is anyone experience the same thing? i went to a neurologist and had a ct scan, but he said it was clean...no sign of stroke...

[Mazcd Partner MPNVoice]

Hi Vivi, sorry to hear you are having this problem, it might be an idea to see an optician to get your eyes tested. Maz

[vivihtp in reply to Mazcd]

thx Mazcd...i’ll consider this also

[Hidden]

Hi Vivihtp,

Vision issues for me were an early symptom of B12 deficiency. I would lose my central vision on a fairly regular basis. Eye tests showed absolutely nothing. I even saw the optician when I had my first episode.

If I were you, I would ask GP to test your vitamin levels, may as well ask for them all to be done. B12, folate, vit D, iron, ferritin , as a minimum . Get a print out if your blood test results , you are legally entitled to it. Also look at MCV, as the higher the number the more likely to be B12 deficient. ( Macrocytosis) However iron deficiency results in a low MCV ( microcytosis) , so if you have both, your MCV will look normal .

Of course the serum B12 test is hugely inaccurate as it measure both active B12 ( what your cells can actually use 10% ish) and the B12 analogues ( that your cells can’t use 90% ish)

Don’t take any supplements before a test.

The higher your B12 the better. Being in range is not always good enough and may not be optimal for you. B12 works with folate and iron so these also need to be good.

There are many reasons for low B12 and one of them is certain drugs cause a deficiency and if my memory is correct HU could be one of them.

I had eye issues for well over a decade until I worked it out. Daily B12 sorted it out within a month, plus a lot of other issues. 😁 in fact I would say my ET was only discovered because of all the symptoms I had from B12 deficiency and my B12 levels were still just in range. Fortunately I do my own research, as Docs know 0 about vitamins. My daughter in law is a newly qualified doctor and she said they had Only half a day on nutrition/ vits in her 7 years of training.

Wish you all the best.

[vivihtp in reply to Hidden]

thx debraNL i think i’ll check my vitamins levels in my next visit

[fee13]

There could be numerous reasons for this. This is one of my early symptoms prior to diagnosis but have since realised it is nerve compression in my neck & top vertebrae which is relieved by chiropractic care. I have had a bad spell of these in the last week with today having loss of balance & wanting to vomit along with it. Came right half hour after treatment.

[vivihtp in reply to fee13]

thx fee13

[flfair]

Hi vitamin B12 symptoms

vitaminb12first.co.uk/vitam...

[vivihtp in reply to flfair]

thx for the info

[hunter5582]

Here is one reference on the topic of ET and diplopia.

by JB Brière - ‎2007 - ‎Cited by 128 - ‎Related articles

Jan 8, 2007 - Essential thrombocythemia (ET) is an acquired myeloproliferative disorder ... Visual dysfunction manifests as attacks of diplopia and sudden .

ncbi.nlm.nih.gov/pmc/articl...

Diplopia is something I have been dealing with for quite some time. It can have multiple causes. I have both monocular (one/each eye) and binocular (both eyes) diplopia. There can be multiple causes for both forms. The fact that you cycle in and out of it could mean a more transient condition like a mild ocular migraine or an ischemic event in the eye, flare up of dry eye, or other causes. The binocular diplopia can be caused by conditions like exotropia or neurologic convergence insufficiency. In my case, I have recently confirmed convergence insufficiency likely caused by the ocipital lobe tumor/resection I had last year. I also have other eye conditions that make assessment more complex (cataracts, dry eye, etc).

Bottom line is definitely need to do follow-up with a ophthalmologist, and possibly a Neuro-ophthalmologist. Would also suggest being sure to consult with a MPN-Specialist rather than a regular hematologist. It is very common for docs to not be familiar with all of the manifestations of MPNs. If your vision is being affected by the ET or anything else, you want to get to the bottom of it ASAP.

[vivihtp in reply to hunter5582]

unfortunately i can’t find a MPN specialist in my country...only regular hematologist...i went to neurologist and had a CT scan for my head...it was clear...nothing...i thought it was a minor stroke at that time, that’s why i went to neuro...well anyway thx for your info hunter5582

[hunter5582]

Hope the info helps. For what it is worth - remember I am NOT a medical professional - just a guy with a MPN and eye issues - I suspect what you are experiencing is at the level of the eyes and not the brain. You may need to see a retina specialist and a Neuro-ophthalmologist in addition to the regular eye doc.

Hope you get to the bottom of it ASAP,

[vivihtp in reply to hunter5582]

thx for the info hunter...it means a lot to me

[MaggieSylvie in reply to hunter5582]

Perhaps you know, Hunter - I forgot to ask my optician about this; is it normal for glasses to mist up for no apparent reason? I seem to be exuding a kind of hot fog. I often have to blink away the misting up in my eyes as well.

[hunter5582 in reply to MaggieSylvie]

There are a variety of conditions that can cause glasses to mist up. Usually have to do with temperature and humidity. Masks of course fog the heck out of glasses. There are anti-fog clothes you can buy to prevent this.

Lots of reasons your eyes can blur too, including blepharitis, conjunctivitis, and dry eye. Good idea to check with your opto-doc on that one.

[MaggieSylvie in reply to hunter5582]

Along with migraines, I used to have dry eyes, but since the stress of going to work has gone, so have they. Wearing a mask, glasses fog up with every breath but I'm talking about the lenses needing cleaning even though I haven't touched them. Often.

[Joetcalr]

Interesting. I had starburst effects in my eyes 5 days ago, they went away after 15 mins also. I may mention them next time I have an appointment