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Pernicious Anaemia Society
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Does vision eventually return or has damage been done?

Hello again everyone, hoping you're all doing well.

After spending weeks now SI every other day, I now feel the best I've felt for very many years.

I'm still waiting for a neurologist appointment which my GP referred me to as there are none in the foreseeable future, (speaks volumes hey!!)

The only issues I now have are burning tingling feet even when my feet are cold, pins & needles in fingers which is a pain as I live for music & play acoustic guitar which has helped me get through some hard times over the years.

Memory is still terrible but, the thing that worries me is my vision. I cannot even see text on my phone anymore as it's just a blur.

Has anyone else had this & does it get better or is that it for me now?

Thank you as always.

Love to all.

Ritchie

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HI Ritchie, have you been checked for cataracts? I think sometimes the 12 deficiency can cause cataracts. I got them in my 50's which is young for cataracts. I had 2 new multifoca lenses put in and my eyes are ok now.

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Hi Melanie.

No but I had my eyes checked 2 yrs ago & had 20/20 vision.

It's only in the past 9 months or so my vision has become blurred close up.

Perhaps I should get my eyes checked again as I cannot believe how much my close vision has deteriorated.

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Yes, I would get them checked again. Today, cataracts are no big deal. I went to the best guy in south florida. If you get the regular lenses , insurance will cover but I wanted the multi focal lenses and insurance did not cover it and it was $5000 per eye out of pocket but it was worth it. My blurred vision now is not from the lenses but I get it after i eat as there is something systemic in my system going on. But I had the cataract surgery done while I was sick and it was no big deal. Perhaps the b12 deficie cy causes it. Hope this was helpful. PS. I am changing to the methyl injections and see if it helps me better.

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Like Melanie, I also had very early cataracts, and I had my eyes checked and at first the optician didn't pick up on it. I was panicking thinking all sorts so I went to my doctor and HE saw the cataract. But it tends to start with blurring on the Side of the vision and then get incrementally worse and worse. Just to add when I first started injecting I had 3 weeks of scarily blurry vision and then it just disappeared and now my vision is brighter than ever. So don't give up hope, and maybe have a doctor shine a torch in your eyes! Best of luck.

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I have glaucoma so I see an eye specialist regularly. I asked her about the implications of B12d and whether or not any of my sight loss/optic nerve damage could be attributed to B12 issues.

She thought not and said that nerve damage from B12d has a distinctive pattern which I do not have.

I’m not aware that cataracts are caused by B12d. Steroid use was the main cause mentioned to me by the specialist.

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Hi Jan.

Thanks for your reply.

I do have reading glasses as I cannot see the screen on my mobile that I always use without them.

I'm now only just turned 51 & it's frightening how much my vision has deteriorated in the last 9 months or so.

Far away im fine, it's just close up.

Just thought I'd ask.

I've never taken steroids, but I'm now convinced all the Oxycontin I was prescribed for my back by my then Dr over the years has caused everything I have now.

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Hi!

It would definitely be good to get retested and get any suddenly advancing problem investigated.

If your long sight is fine then I'd be surprised if it's an optic nerve problem but it still should be checked.

If my sight goes fuzzy due to deficiency problems it's because I'm short of magnesium and my muscles aren't able to work properly, including those that pull the eye lens into shape for focus.

As you are SI regularly you may well benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet.

It could be worth either getting tested for these or Googling the different things to see what rich food sources of each you may like.

Well done on doing your jabs. If you ever get to see the neurologist and they tell you that you shouldn't be having so much B12, please try to tie them down to a scientific reason why not, backed up with documentation!

I hope you get things sorted soon!

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Thank you deniseinmilden 👍

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I think it’s normal at around your age for your close up vision to deteriorate. I’m late 50s and I know that mine did and my reading glasses prescription is around 2.75.

My distance vision however is perfect. Funnily enough my specialist and I were talking about that at my last visit and she said that age gets you one way or the other and if you have good distance vision your reading will be worse than the person who has poor distance vision.

Always get your eyes checked out by an optician though if you have any concerns.

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Thank you

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Hi Ritchie. I’m 53 and have had PA for over a year and I manage my own care through SI and dietary supplements for my stomachs issues. About 6 months ago I had problems with my vision amongst many other things. I couldn’t read labels on packets, had double vision and lots of floaters in my eyes.

I went to my optician and although she thought my eyes were normal made an urgent referral to the local Ophthalmologist in the NHS.

I saw a Consultant within 3 weeks who was very thorough. She was concerned about macular degeneration but found no evidence of this. What she did say was that the gel like substance that covers my eyes was ‘aged’ in other words it was older than my years. When I asked if this could be down to B12 deficiency she said that was highly unlikely but didn’t say why.

However if you look here ncbi.nlm.nih.gov/m/pubmed/1... this study shows a clear link between B12D and macular degeneration.

I would suggest you make and appointment with your optician and take this study with you and ask for a referral to the NHS Opthalmology unit (I live in Scotland and they wouldn’t accept a referral from my GP).

I hope this helps.

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Hi Martin.

That is a great help thank you very much!

I will definitely make an appointment with the optician.

And all the best with everything & thanks again! 👍

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Just one other thought, if your blood sugar is high then the lens swells and causes blurred vision, for me it is very noticeable for close up things.

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Thank you.

I have been told also on two separate occasions I have diabetes before being diagnosed with PA, but on both occasions when sent to hospital to confirm the tests where you have to drink something horrible, I was told I'm fine.

I did have blood sugar checked at last blood test but I'm still waiting for that result.

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Normally, if it is high blood sugar it will vary during the day, being worse after meals. Maybe worth getting a tester to monitor it, they are not too expensive, although the test strips can be.

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Just rung opticians & they will see me at 11.15 today.

Thank you for all of your advice - I'll let you know what they say.

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I've been like this so long 2 years finally saw a specilist said I'm gunna get you better girl .. he was pretty certain but said will take 12 to 18 mths now I'm waiting for his report

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It could well be presbyopia (old eyes).

I had an eye test at age 48 and the optician expressed surprise at how good my close focus was. Three years later she was sorting out varifocals for me because I couldn't read in dim light.

Now, 10 years later, I have a magnifying glass to hand for reading sell-by dates on foods.

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I had blurred vision - blurred distant vision came and went and still occurs occasionally after three years of treatment. I originally had blurred vision on close ups but it stopped soon after injections.

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I know when it’s time for a top up when my vision changes, less clear and blurry. After a few days better again. Also tinnitus, noise gets reduced after top up, thank god. Heavy legs, getting up the stairs gets to be an issue, also better after a day or 2-3. Migraines reappear. 😏😔

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I had tinnitus (sound of interference on an old radio caught between stations) followed by auditory hallucinations. The tinnitus took a year and a half to stop and the auditory hallucinations over two years. There are no quick fixes for this illness. I have b12 deficiency without (as yet) PA and if you look on the b12 society website at testimonials they’ll tell you about the symptoms of b12 deficiency caused by damage to the myelin sheath.

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My tinnitus has never gone completely, I have been on injections for years now. After an injection it gets reduced so it is easier to ignore.

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I can't say I actually suffer from tinnitus, I do get ringing in my ears at times but it only lasts a few seconds, I always used to put it down to listening to & playing my music too loud 🎸😁

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Well, my optic nerve is fine which is what my main concern was about.

But my eyesight has deteriorated since last test. So I'll just put it down to getting on a bit.

Worth asking though & thank you everyone for your comments & advice.

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I've had alot of vision problems resulting in a change of prescription 3 times over the last 5 months. I'm pleased to say I csn now see through my old prescription glasses. I've had to go down 2 steps from my last ones and seemed to have settled now. Thank goodness as an expensive business. So with every other day injections for 7 weeks and now weekly b12 hydroxocobalamin I've seen improvements. The only time it goes down again is with the debilitating headaches I get. I also got a referral to an eye doctor as worried about optic nerve damage. My eyes are healthy so it was the nerves in my brain not functioning. However presbyopia does set in from your 40's so if in that age range could be that. Hope helpful.

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Thank you Nackapan, yes very helpful as always!

I actually thought it was 2 years ago when I had my last eye test but, the lady there said it was June last year!!

And to think I used to have a great memory!

The optician said it can seem odd that my vision has deteriorated since June & it may well be down to my PA etc but also could just be down to ageing.

Well £160 spent on being able to see again & the fact my eye health was fine means so very much.

We plod on as always, thanks again!

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Yes . Good your eyes healthy even if you do need a bit if help now! Yes we plod on. Take care.....and of the glasses. ...as yes costly

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My eyesight gets better or worse along with my other symptoms.

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