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Pernicious Anaemia Society
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Hi has anyone had optic nerve damage with there B12 defiency? Thanks

First time poster all new to me , having B12 neuro symptoms and need some advice thanks

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Hello. Do are you on injections? Plenty of people on here csn answer specific questions and share experinses so you won't feel alone

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Hey thanks for getting back to me, my stories about tricky my gp refused to treat me so I was paying private for injections but I was not having the injections frequent enough as they were costing me £95 for a nurse to come out. I have just ordered B12 ampoules and needles and I’m just waiting for them to be delivered.

I’m nervous about self injections, can anyone tell me how long I have to inject for please

Thanks

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Hi Antstarr

First think of the 80 or 90 injections you can get for every one you had before! Buy yourself something nice.

I started self injecting earlier this year.

I made a little ritual which helped with the stress at first, and now it means I can't forget anything in the middle of the injection.

I have a small box with 6 things in it - 1. Ampoule of B12. 2. Syringe. 3. Needle for drawing up from ampoule. 4. Finer needle for injecting. 5. Alcholic swab. 6. A sheet of kitchen roll. (Sometimes I bleed but that is no problem.)

I have a bigger box with 7 of each item.

Injection done, 2 needles into sharp box, throw out the debris, and fill up the small box, from the bigger one, ready for next time.

PS I have double vision but I don't think it is caused by B12 D.

Good luck with the injections, they will become easy after a short time.

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Aww thank you so much for replying can I ask you what size needle gauge do you actually use to self inject? We’re do you self inject and what type of B12 do you use? I’m worried about the drawing up part more the air bubbles because sometimes regardless of how many times you tap the needles there are still air bubbles

Thanks again for taking the time to get back to me

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I will make a list for you shortly. I get them from Medicare. I got my list from wedgewood , on this site, you may be able to find hers

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Aww thank you also I have heard that methylcobalamin is the best type of B12 to use for the nerve damage but my doctor is telling me to take hydroxocobalamin? What’s your opinion on that 🙏

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Sorry, I don't know, but I'm sure one of the 'experts' on here will answer that for you.

If not repost it.

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I had optic nerve issues, well I am assuming it was my optic nerve. I had blurry vision for a few weeks until I started every other day injecting and now the blurred vision is gone.

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Thank you so much for getting back to me, do you still have eye issues did you get pain with your eye problems

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Yes I still do have occasional eye pain but not as much. I feel that is slowly going away too.

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What type of b12 did you use shaylynn? Methylcobalamin or hydroxocobalamin thanks

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Methyl

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In your opinion is it better then hydroxocobalamin?

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I have heard methyl is the best form especially for neurologic symptoms

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I have eye issues and I am on hydroxocobalamin but I feel like it’s taking forever did you try hydroxocobalamin or have you only tried methyl?

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Only methyl

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And how long did you do your loaded doses for? And how long to you inject now? Thank you

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I have been injecting every other day for 7 weeks. I’m on my 8th week now.

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Really ? Did your doctor instruct you to do that my doctors only saying for 2 weeks

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I have a naturopath who has let me inject based on my own symptoms. I will prob go to 3 a week soon and see how that goes and then 2 a week and so on. I would rather do too much than not enough right now so I don’t backslide.

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It took at least 4 weeks before I started to notice significant improvement in all my symptoms.

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I was thinking the same I’m only on week two and I feel a little better but if I stop I know the symptoms will persist, I don’t know if I should change to methyl I’m on hydroxocobalamin

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I would def give methyl a try and keep injecting longer. Two weeks I don’t think is long enough.

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Do you know what the actual difference is of the different b12

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No I don’t. Sorry. You prob can Google that info.

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Thank you for your advice and help

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I have some sight loss from glaucoma and asked my specialist whether my B12d could be implicated. She said not as the area and pattern of sight loss is different from that resulting from B12d.

If you feel that you have any sight loss I would recommend that you see a specialist in order to avoid the possibility of further loss.

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Thanks for getting back to me, I have seen a ophthalmologist had X-rays and mri ultrasound off the eyes everything you can imagine, the doctor says they cannot see anything wrong, apart from optic nerve swelling I had initially, no glaucoma they said my eyes look normal

I know optic nerve swelling is a rare symptom of B12 deficiency

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Another thing. My eye dr told me my eyes looked great when I went to get a new prescription because of the blurred vision. Said my optic nerves were fine too. I was so confused. It’s like the b12 destruction is hidden from them. They can’t see anything but we can sure feel it. So crazy!

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I have an enlarged optic nerve and worsened vision in one eye. It was diagnosed a year after my serious b12 deficiency problems began. Seems related as there are no other reasonable conclusions.

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Thank you for getting back to me, can I ask what do they do for this? Are they able to treat it? Is it the left eye

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I wish. My docs just said to keep an eye on it. Has anyone else heard other adobe? My eye continues to worsen.

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Optic nerve swelling can resolve with the right B12 treatment, I’ve read plenty of studies online where people presented with optic nerve swelling and then after treatment of B12 it resolves obviously it takes a while, and I’m pretty sure methylcobalamin is the form of B12 they use for optic nerve issues

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B12 Peripheral Neuropathy does not cause nerve swelling. It causes loss of myelin from the nerve sheath. As such it will, if anything, make the nerve fibre smaller. It does not give any observable defects on an MRI.

Hydroxocobalamin is just as good as, if not better than, methylcobalamin. Once they get into the cell, both forms are converted to cob(II)alamin.

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Thank you whatever happened to my optic nerve started to get better once I self injected I’m on my 2 week and my eye feels better is I am defo putting it down to the b12 issues, so do you think I should continue on hydroxocobalamin because along with optic nerve issues I have trouble focusing and my eye just feels like it has a headache ...

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I’ve also read about the optic nerve damage but can’t remember where. Please share any studies you have on this topic. Thanks!

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