Blurry vision?

Hello there, has anyone with pernicious Anaemia have really blurry vision sometimes? My vision seemed fine before PA.

[Vonnie-72]

Hi, yes mines really terrible, blurry, aching and I have floaters had an eye test 5 weeks ago as I was scared but no there’s nothing sinister and just a slight prescription for reading glasses.

[Hidden in reply to Vonnie-72]

Hi Bonnie, thank you for responding. I too have floaters. So glad your eye test came back good. Best

[Hidden in reply to Hidden]

Sorry Vonnie typed a B instead of V😏

[Sammyo23]

It's one of the ways I know I need another shot.

[Hidden in reply to Sammyo23]

Thanks Sammyo23. Best

[Sammyo23 in reply to Hidden]

For me, it started with not being able to read signs from a distance away. It's something different than bad vision, more like I need to be closer to something before my mind can comprehend it.

It progressed to night blindness, or at least darkness made it harder than ever to see. I still have problems seeing in the dark.

[Hidden in reply to Sammyo23]

You know Sammyo23 I've even had similar. When I look at something. It seems to take longer to interpret.

[Nackapan]

Yes I've has lots of vision problems. Blurry

Sometimes lkke looking through a cloud.

" words jump

Text fades ftom the right as I type

Csnt cooe with syroies bust patterns.

(Swrs off tinnitus snd head ksibd dbd stagger walk.

Light sensitivity to artifivusn lights.

Walls close inon me

Only recently betn able yo look at a magazine gir s short while.

Still have to read in very small areas

This phone 2" wide by 5"

At tge start coukdnt even put my glasses on as could set my head off ( migrains)s coukdnt do anything

My prescription went higher .

Then after a few months if b12 my prescription went back to where it was

I've seen 3 levels of opticians.

A hospital consultant snd most recently a neuro Opthalmologist.

All have reassured me my optic nerve fine.

My eyes are healthy.

No reasons or explanations given for any of my symptoms o ???

All very frustrating

I csn only assume all to do with a brain to eye signalling problem.

Nerves ,axon connections

vestibular disturbance.

As always static when testing is done.

Obviously get your eyes checked by as many people as possible.

Like you it comes and goes.

Having just started to be able to write on paper I have to limit it to a card .

Also notice my handwriting varies alot.

So don't overdo visual wotk or give yourself eye strain.

I watched about 2 hours TV since November.

Strictly a no no . Used to love it !

Tinnitus stats brain feels irritated

Thrn stagger walk

Can ferl really sick.

I've noticed? MH put on my notes

It isn't!!

They just haven't an answer yo my questions or symptoms

Hope it goes for you.

Does it happen more when b12 due?

Or in any particular setting?

T c

[Hidden in reply to Nackapan]

Thanks Nackapan. Yes, you're right it does happen when shot is about due. I was wondering if it had any relevance to me changing from cyanocobalamin to methylcobalamin. It's been 2 weeks now on the methylcobalamin. Best.

[Nackapan in reply to Hidden]

Do you find any difference? Mt friend recently made the switch.

Way more expensive and made her a bit irritable.

So when it's finished going back to cyanocobalamin

Any bonuses for you?

[Hidden in reply to Nackapan]

I think I'm more alert and on the ball with the methylcobalamin. It's the vision that's not so great. So much stuff to figure out with PA.

[Hidden in reply to Hidden]

Do you know the outcomes of alternating methylcobalamin and cyanocobalamin?

I've been here awhile, I think I'm going for a sun rising walk and PA YOU ARE NOT INVITED

[Gambit62 Administrator]

I have lots of problems with blurry vision but I think mine are more related to migraine than B12 - I get visual snow and this isn't necessarily accompanied by headaches - much less so now that I am post-menopause.

[Hidden in reply to Gambit62]

Hi Gambit62, I hope it gets better for you. Best

[Curlygal]

Yes, and I don't know why or if it's caused by the PA/B12D. I inject about once a week. They've found no medical cause so my best guess so far is a drug reaction to lansoprazole (it's a rare side effect). I'm also on pregabalin but I was on that before being diagnosed with B12D, so it's probably not that. The blurriness flares up every few months then subsides again, it's weird.

[Hidden in reply to Curlygal]

Thanks Curlygal.

[ClareP5]

I didn’t realise that my colour vision had faded til I went onto B12 replacement therapy. I SI EOD and have done for over a year - hoping for more improvement! I no longer get migraines, hand writing has improved and can read and enjoy it again. How much B12 are you taking?

[Hidden in reply to ClareP5]

Hi Clare P5 I get them weekly.

[Nackapan in reply to ClareP5]

That's good news

[pitney]

Yes !!! I could have a new pair of glasses every day and still not be able to see properly🔍😆

[Hidden in reply to pitney]

O pitney I'm sorry about that 😔

[Cinderellen]

Most definitely. On the day of my first ever b12 injection I walked into the surgery with blurred vision, had the injection, got into my car and realised that I no longer had the blurred vision. So, I would say that there is a connection however, there's been times when I've SI'd at home and the blurred vision hasn't improved but, I know that there's been other things going on too... ie : iron deficiency and also sinus issues. I'm currently seeing my optician often due to some eyesight issues including neuro - flashes and things appearing like they're moving. I've had new specs and sunglasses, dry eye treatment including masks, wipes, drops so far it's all made an improvement but the neuro issues do still happen. At these times I tend to SI just in case it's a b12 thing going on. I've been told that my optic nerve is ok and that the health of my eyes is good. My prescription did increase slightly so reading has improved but there are still times when the words 'float' or 'merge' on the page. It's worse with black writing on a white background. I go back to see her after 6 months next Wednesday so she'll have to decide whether or not to refer me. I think she's more concerned with the severe headaches, light sensitivity and flashes/peripheral disturbances I have. She saw me whilst I had a really bad headache and light sensitivity and suffered greatly from being in a darkened room with these bright lights as part of the eye exam. I must say that having these issues with my eyes undermines my confidence outdoors as it does make me feel vulnerable at times.

I have cervical spine problems, sinus and eustachian tube dysfunction also an iron metabolism disorder (which can affect eyes), the PA, of course, and a connective tissue disorder which again can affect the eyes and focus (in fact, I had an operation aged 7 to correct the muscles at the back of the eyes). So, I appreciate it's not easy deciding where the problems lie but, like you, I can't remember having blurred vision to this extent before the PA despite having all those other conditions from birth (even if they weren't known about until the last 10 years with exception of the connective tissue condition).

[Hidden in reply to Cinderellen]

So sorry Cinderellen! I so hope it gets better for you soon. Best

[Litatamon]

Yes I had blurry vision and double vision for months on end. Both disappeared with my loading doses. My GP insisted they were not a b12 issue, even after telling her the above.

I just answered, "Yes they are." And we were back and forth like five year olds.

I did not need any proof as both disappearing with shots was enough for me but they are indeed listed as b12 deficiency symptoms. Sometimes as strictly vision issues and at times specifically double vision listed.

[Hidden in reply to Litatamon]

Litatamom, you see... the part where you say to your dr. that it is B12 related and GP insisted its not b12 related. It gets me so so so furious when my doctor tells me that it has nothing to do with B12. No matter what I tell them about my vision, tinnitus, nervousness, UTI's and believe me I could go on they say not b12. I want to scream.... CONNECT THE DOTS DOCTORS.

[Litatamon in reply to Hidden]

For me, her lack of knowledge and/or listening to how this or that immediately changed with loading doses - some after years of symptoms - helped me. I mean some things were just common sense - had it for years, injections took it away -not difficult to mull that around.

My prize - I gave up early. I remember looking at her and thinking if she is wrong it won't be her health, her life that will be impacted - it will be mine.

And I began self-injecting almost right at the beginning. And I believe that has helped my recovery immensely.

I am not undercutting how incredibly frustrating and unfair it all is, just highlighting how freeing it is to lower expectations. One only has so much energy in those early days. I still fight/fought for change for others, but only in places that have possibilities. For example, I made sure my thirty plus symptoms that she was uninterested in verbally hearing about for future patients (not even two or three could she take in) were written out and added to my file. Over eighty percent left with loading.

My gynaecologist is a saint as a doctor and a good man, he is the only place where I put energy to fight for change in medicine. I know where change is not coming.

[Curlygal in reply to Litatamon]

I also gave up early. Saw the GP, explained my lingering symptoms, tried to talk about the guidelines, etc etc and was basically stonewalled. I saw my file later and the GP had written "Patient came in with a list of 14 complaints". I started self injecting after that consultation. I decided that pushing wasn't worth the bother if they weren't even prepared to listen!

[Litatamon in reply to Curlygal]

Good for you Curlygal. I am so sorry that happened to you.

It is beyond freeing not to rely on them.

I have told this story before -

When I finally got an appointment with a neurologist, he told me he never has b12 patients in his practice.

I mumbled to myself, "Yes I am sure. They are far too busy masquerading as your MS and dementia patients."

He also told me to eat more meat. Insert so many wonderful words here.

[Curlygal in reply to Litatamon]

It is very freeing but we shouldn't be put in that position. To be honest I don't even think about bringing it up any more because I don't expect doctors and other clinicians to understand, or care. I did tell a nurse and she told my immunologist who put it in a letter to my GP but the GP has never mentioned it. I do remember that the GP who originally diagnosed me said it was likely my symptoms would return before my next injection. In general though, I think they see self injecting as evidence of a mental disorder. The nurse I told certainly looked at me like I was a crazy person!

[Litatamon in reply to Curlygal]

Of course we should not be put in that position.

But unfortunately it is reality, and I am a lot happier accepting the reality - and fighting against it when I think it will have any merit/effect and I have the energy.

-------

Who cares what they think of self-injecting.

It has changed many of our lives and if they were put in our position, no doubt they would be doing the same.

My sister has had her injections totally scrapped during Covid. I inject her now, after months of watching her suffer. My sister decided to tell her doctor. She went bat shit crazy about it. Priceless! She is the one keeping critical care from a patient and she has something to say?

She asked if I was a nurse, like it takes great skill to fill a syringe and inject. Plus we have b12 available to us without a prescription in Canada, and needles, so it really is none of her business at this point. They made their decisions during Covid. I counselled my sister to not suffer through it.

Sorry 25092, for taking your thread off topic.

[Curlygal in reply to Litatamon]

I was lucky in that the nurse who gave me my loading injections offered to teach me how to self-inject. So I just order my B12 from the GP every 12 weeks and do it myself. But it also meant that I wasn't too freaked out by the thought of it when I started supplementing with more frequent injections. I've been quite fortune in some ways. I don't have a lot of lingering symptoms except my exercise tolerance never returned to normal, and I have a little bit of peripheral neuropathy (not that this has been officially diagnosed...I have freezing cold feet, altered temperature awareness in my feet and occasionally shooting nerve pain in my toes).

[Litatamon]

I also had severe light sensitivity, felt like I was being attacked at times. Also disappeared with loading doses.

[Hidden in reply to Litatamon]

Yep....car headlights use to bother me

[Hamayeshguy]

Mine it was really bad I think my side vision s are better than straight vision. I have blurry kind if double vision. But it's getting better I think I need at least 40 shots to get back normal if nerves not damaged yet. Because it started four years ago and actually was my low B12 symptoms until I had RBC macrocytosis last September. I had 29 shots and I feel much better than before.

[Runner623]

Hi! I’m in the US. Arizona. My vision began to get blurry and I couldn’t see to drive or read even with a magnifying glass. My hematologist said it had no relation to PA. I knew that wasn’t true.

I have multiple sclerosis and see a cornea specialist every year. On my visit I told him about PA and he asked what I was doing in relation to B12. My neurologist had told me to ignore my hematologist and go to a natural path doctor (ND) and get b12 infusions and injections as I was having pain in my spine. I told my cornea specialist about the infusions and injections and he told me to keep doing it.

He advised to stay with my ND as hematologists don’t seem to under PA. He said he’s had hundreds of patients lose their vision by getting 1 injection per month rather than what that patient needed. He advised me to flood my system as it couldn’t hurt me but only help. My neurologist said the same.

My vision is a bit better but I’ve lost some of it from ignorance. At this point, I feel I know more about PA than my GP and any of the 3 hematologists I’ve seen.

So far, I’ve been able to avoid blindness and sub acute combined degeneration from my neurologist and ophthalmologist knowing more outside their fields than hematologists who are supposed to know and care.

I learn a lot from the chat group and read and study any and all things b12 related.

I wish you much luck.

[Hidden in reply to Runner623]

Smart move runner623. It just makes me so sad to think of all the PA sufferers that took the advice of these specialists and did become blind or cripple.😪

[LittleA]

Hey yes me too. I wear reading glasses for when I’m looking at screens. I have found also I’m really sensitive to light as well.

I’ve had an eye test and have patches behind my eyes I’m not sure this is due to PA and I’ve been the eye clinic at the hospital and it’s not life threatening so it’s just the change of pigmentation in the back of the eye.

I’ve always wondered if anyone has had this with PA too