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

Antstarr profile image
33 Replies

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

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Antstarr profile image
Antstarr
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33 Replies
Nackapan profile image
Nackapan

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

Antstarr profile image
Antstarr

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

shaylynn profile image
shaylynn

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.

Antstarr profile image
Antstarr in reply toshaylynn

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

shaylynn profile image
shaylynn in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toshaylynn

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

Methyl

Antstarr profile image
Antstarr in reply toLyynn123

In your opinion is it better then hydroxocobalamin?

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toLyynn123

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?

Lyynn123 profile image
Lyynn123 in reply toAntstarr

Only methyl

Antstarr profile image
Antstarr in reply toLyynn123

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toLyynn123

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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.

Lyynn123 profile image
Lyynn123 in reply toLyynn123

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

Antstarr profile image
Antstarr in reply toLyynn123

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toLyynn123

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toLyynn123

Thank you for your advice and help

JanD236 profile image
JanD236

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.

Antstarr profile image
Antstarr in reply toJanD236

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

Lyynn123 profile image
Lyynn123 in reply toAntstarr

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!

Ratherbewalking profile image
Ratherbewalking

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.

Antstarr profile image
Antstarr in reply toRatherbewalking

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

Ratherbewalking profile image
Ratherbewalking in reply toAntstarr

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

Antstarr profile image
Antstarr in reply toRatherbewalking

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

fbirder profile image
fbirder in reply toAntstarr

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.

Antstarr profile image
Antstarr in reply tofbirder

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 ...

Ratherbewalking profile image
Ratherbewalking in reply toAntstarr

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

Antstarr profile image
Antstarr

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

Antstarr profile image
Antstarr

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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