Blindness?

[AlaskaRuth]

Has anyone had issues with going partially blind? I recently lost the peripheral vision on my left eye. I have had MRI's and MRA's with and without contrast and the doctors see nothing that possibly caused this. I was wondering if this is something associated with pernicious anemia? Any thoughts would be appreciated.

[clivealive Forum Support]

Hi AlaskaRuth I'm not a medically qualified person but I do know from my own experience that P.A. can be associated with retinopathy as my left eye is affected.

I also have Type 2 Diabetes which can have the same effect but as I've only been diabetic for 18 months my money is on the P.A I've had for 45 years.

Do you have a Vitamin B12 Deficiency or P.A?

[AlaskaRuth in reply to clivealive]

P.A. I've been self injecting for about ten years now. I've seen the opthamologist and retinologist with no answers and was thinking maybe they aren't thinking outside of the box. I have an appointment with my GP on Friday to discuss this.

[Foggyme Administrator]

Hi AlaskaRuth. Hmm...a difficult question. B12 deficiency can cause visual disturbances (as can many other things) but I'm not sure if it can cause the type of problem you describe.

I'd be interested to know how long you've had this and whether you've had any sort of eye injury. Also - was it a sudden loss of vision or a gradual decline? A tear to the retina or a detached retina can cause a symptom like a curtain being drawn across the peripheral vision and sometimes 'shooting stars' or white flashes that fall down across the corner of the visual field - more noticeable at night. This can sometimes happen spontaneously rather than being due to injury.

Probably sounds like a daft question but has your neurologist actually looked into your eyes and examined them? I ask this because some medics tend to rely too heavily on scans and blood tests and miss out the all important physical examinations.

And have you seen or been referred an Opthomologist? This might be a physical problem with the eye rather than a neurological problem (though it would hoped that if this was the case, your neurologist would have spotted it).

Most large cities have eye casualties attached to the A & E Department and if you're really worried about this, then it might be a good idea to pop in and let them take a look, even if only for your own peace of mind. They're usually very good and patients routinely get sent by opticians for quick checks on these kind of issues.

There was a post recently from one member ( deniseinmilden ) who spoke of failing vision due to B12 deficiency so perhaps if she spots this post / reply she'll be able to say if it was similar to what she experienced.

Sorry I can't say anything more definitive and good luck with the search for answers. Please let us know how you get on and post again if you have any more questions or need further support.

Take care X

[AlaskaRuth in reply to Foggyme]

Thank you for your suggestions. I have been seeing the retinologist and opthamologist. I had a couple of retinal tears repaired in that eye, the blindness came on at the same time as the symptoms as the tears. This was about two months ago now. I was thinking maybe I should go to a neurologist? I do live remotely on an island with a population of about 2000 so have to travel to specialists, and of course, that means a time lag to get back and forth.

[Foggyme Administrator in reply to AlaskaRuth]

Hi AlaskaRuth. If the symptoms came on at the same time as the retinal repairs, I would suspect that it's possible that there may be a link to what is happening now.

I note you say it's two months on now - have you had a post-repair check-up? If not, might be a good idea to arrange one 😀.

Good luck. Hope all works out okay for you and would be interested to see how it goes.

[AlaskaRuth in reply to Foggyme]

Hi Foggyme, I thought the same, that it might be related. I have seen 4 retinologists and 2 opthamologists and they all say it is unrelated but that they don't know what caused it -as in nothing pressing against my optic nerve, no tumors or vessel problems. I go back to the retinologist in a week for another follow up...for the repairs, etc. It is just oppressive, the blindness, and the not knowing what has caused it, if it is going to get better or get worse. I wrote here because I need to figure it out. Thank you for your information-on all fronts.

[Foggyme Administrator in reply to AlaskaRuth]

No problem AlaskaRuth. I understand how worried you must be and am keeping my fingers (everything) crossed that somebody comes up with some answers for you.

Good luck x

[Hillwoman]

My own vision has been affected by PA, but not in the way you describe. I would take up one of Foggyme's suggestions, as soon as possible.

[deniseinmilden]

Hi,

As Foggyme said I have problems with my vision if I don't get enough folate, potassium and particularly magnesium with my B12 but I'm not sure it's the same thing. It maybe worth thinking about though.

I hope you find a solution soon.

[Gambit62 Administrator]

aware of links between B12 deficiency and glaucoma but the theory is that that is effect of B12 in blood vessels so the related damage would have shown up.

Sight is a very strange thing - like hearing - problems may not necessarily be in the eye - might be in the brain - though sounds like you have had scans and they showed up nothing.

Sorry but I can't help on this one beyond above.

[Gambit62 Administrator in reply to Gambit62]

sorry - just thought of something but would only apply if you are being treated with cyanocobalamin - leber's syndrome - but I'm still not sure how the blindness caused in those circumstances works and whether it would fit with the pattern you are reporting.

[AlaskaRuth in reply to Gambit62]

Hi Gambit62, I am using cyanocobalamin and have never heard of leber's syndrome. I will definitely read up on it. Thank you

[fbirder in reply to AlaskaRuth]

Coincidentally, I've just been looking at this for another post. Leber's Optic Atrophy is caused by a genetic mutation in the mitochondrial DNA. It mainly affects young men.

[AlaskaRuth in reply to fbirder]

I read the same about it. It sounds like a different situation. Thanks for checking, tho.

[ndodge in reply to AlaskaRuth]

I looked it up also and the peripheral vision seems to stay intact with this disease, mainly the central vision is affected.

us.optelec.com/eyecondition...

[rusholme in reply to AlaskaRuth]

I also have heard of this. I can't remember where I read about it - possibly somewhere on this site:

"If there is a history of leber's syndrome in your family then you should not use cyanocobalamin - its a condition that affects the optic nerve and can lead to blindness - and is a reaction to the cyanide molecule"

When I started SI I decided not to use cyano (my daughter could have bought it very cheaply whilst in Spain) as I do not know anything about the paternal side of my family.

[Hidden]

I'm not a dr. medic etc. I had something similar happen to yourself in my right eye last year and the same thing in my left eye this year. For me it happened suddenly. We were sitting parked in the car and it was as if someone had thrown mud on the car windscreen. Then this turned into two long 'snakes' and that disintegrated into a camouflage net. I get flashing lights down the sides, more noticeable at night etc. I'm left with the camouflage net of floaters.

My dr. Immediately telephoned the eye clinic for an emergency referral. The diagnosis from the eye clinic was PVD. Told to go to A&E if it happens again or vision gets worse.

Does any of that seem familiar to you? Very disconcerting indeed when it happens.

Best wishes, 'M'

[AlaskaRuth in reply to Hidden]

Thank you, Mabsie, I had the same happen -the web, lights and still have the floaters. That happened a couple of months prior to the rentinal tears. It is scary!!

[fbirder in reply to AlaskaRuth]

I've had floaters for around 40 years, ever since I gave myself concussion. At the time I was told it was due to a small bleed in the eye and these were cells and other debris. I would guess the retinal tears would have similar results.

I also get the flashing 'snakes' for the past 30 years. These are due, I've been told, to migraine. I'm lucky enough to not get the proper headaches, just visual and mental disturbances.

Both were decades before my B12 problems.

[Hidden in reply to AlaskaRuth]

I'm an older lady and was told it's more likely to happen as one gets older but it can happen at any age! The floaters one gets after the PVD is nothing like the small ones I had prior to this.

Hopefully AlaskaRuth it has nothing to do with PA. My father had PA and didn't have those sort of eye problems.

Let's hope for both of us and others with similar problems that all settles down.

Meanwhile I think I'll hibernate for the winter soon. 😉🍀. I detest winter and the cold.

Take care 'M'

[hendry in reply to Hidden]

I also had visual disturbance starting around 6 years ago. The central part of my vision would disappear for sometime up to 20 minutes. It was is though I had come inside from being out in bright light and my eyes were adjusting. However they took about 20 minutes to do so. it never occurred in both eyes at the same time. In fact this was one of the first symptoms that indicated to me that I might have P.A. I did a lot of googling at this point and came across some info suggesting that this was a classic pointer to b12 deficiency.This has only happened a few times since commencing intensive b12 injections. recently I had the zigzag pattern for a few minutes and I have learnt that this is a classic indicator that I am low in probably b12 or possibly folate. certainly when I have lesser times between injections I do not have this. Additionally I have had myeyes checked at the optician and have been assured my eyes are healthy

[Polaris]

Good advice from Foggyme.

I too believe there is a connection with B12 def. I do a lot of reading, plus have had classical migraine linked to a PFO (zig zags or snakes, black holes in vision but, luckily, no headache) all my life but found my eyes improved generally with B12 supplementation as well as a g/f diet (gut/brain axis again).

Foods high in lutein, zeaxanthin, e.g. black currant, blackberries, and blueberries, are good (pilots during the war swore by blueberry jam to improve their eyesight and be able to see the enemy more clearly in the dark).

A good link to learn more about eye health generally :

greenmedinfo.com/blog/best-...

[AlaskaRuth in reply to Polaris]

That is an interesting article, thank you for sharing!

[Foggyme Administrator]

Hi again AlaskARuth. I've had a quick look to see if I can find anything about the post-operative period following retinal surgery.

It appears that final vision depends on the nature of the original detachment / tear and that it might take months for vision to stabilise following surgery. Following surgery, scar tissue may form and require further surgery, but this is very rare (called proliterative vitreoretinopathy PVR, for short). But I expect your doctors would have spotted that.

Don't know how much information you were given following surgery but here's a link, in case you want to have a read (also more on the Internet)

moorfields.nhs.uk/sites/def...

It might just be that your eye is stabilising following surgery, so fingers crossed.

Take care X

[AlaskaRuth in reply to Foggyme]

Hi Foggyme! That is the reason for this follow up visit to the retinologist. The scars from the laser repairs are tugging on my retina, causing light flashes and can potentially lead to retinal detachment. I'm glad they are following it because it is hard to know if it is just healing or if there is more damage occurring... I just wish they could suck out the huge floaters -they are almost worse than the peripheral blindness.

Thank you for your insight

[Foggyme Administrator in reply to AlaskaRuth]

Ah ha. Good luck 😀

[MariLiz]

Has the sight loss remained permanent, or was it temporary? If temporary it could be a type of migraine.

[AlaskaRuth in reply to MariLiz]

Hi MariLiz, that is what I am trying to find out. Since they don't know the cause, they have no idea if it will get worse, get better, or stay as is. It has been consistent for almost two months now. I do get ocular migraines, this isn't part of that, as far as I can tell anyway.

[MariLiz in reply to AlaskaRuth]

It must be very frightening for you. I do hope the medics will get to the bottom of it for you. One of my friends had surgery for a macular hole. She has lost part of her peripheral vision after that op, and admits herself that she is a danger to other pedestrians when she has an umbrella 🌂! Wishing you well. MariLiz

[AlaskaRuth in reply to MariLiz]

😃

[JanD236]

I have lost central vision in one eye and peripheral in the other due to glaucoma and I assume that your various specialists will have checked you for this? Your pressure needn't necessarily be high to suffer damage if you are susceptible

I did ask my specialist from Moorfields eye hospital if my glaucoma damage could be related to PA or B12d but she wasn't aware of any link saying the sample of people who have both is probably too small to test.

Gambit62 if you are aware of any links I would be really interested to know so that I can enlighten my specialist!

In my own case I suspect I would have had glaucoma anyway as both parents had it. My mum has an under active thyroid and her B12 level is 236 so I'm keeping a very close eye on her for PA. Her sister has PA. My dad had no autoimmune diseases as far as I know and his glaucoma, like mine, started younger than my mum's and needed more aggressive treatment.

[AlaskaRuth in reply to JanD236]

Hi JanD236, They have told me I don't have glaucoma and they eye pressure is mid range, so I haven't looked into that any further...yet, anyway!

[CarolineS]

Ask your doctors to consider Idiopathic Intracranial Hypertension. Left untreated it can lead to progressive loss of peripheral vision, and enlarged blind spot. I had this, although thankfully it has gone into remission, however I have noticed that a fair few people with IIH also have b12d, enough to make me suspect an as yet undiscovered link.

[AlaskaRuth in reply to CarolineS]

Thank you, CarolineS, I will definitely look into that.