Advice please - B12 auditory/optical neuropathy

[Corney23uk]

Does anyone have any experience of sight and hearing loss with B12. My daughter (27) suffered with low B12 and was nearly reduced to being wheelchair. There is a family history of PA etc. The severity of her symptoms means that she has has been injecting every day and has regained 95% of her mobility in six months. However the structure of her ears and eyes are good but she is still suffering hearing and sight loss. We would appreciate any thoughts on whether she should increase her injections to twice a day to see if that will help?

Thank you

[Nackapan]

Wonderful your daughter has regained her mobility in such s short time.I would personally just keep the regime she is on.

More time is probably needed.

My sight was greatly affected .

Text still disappears from the right as I type or read.

Has improved ovef 5 yesrs .

My hearing affected.

Tinnitus and got too acute.

At one stage I couidnt eat a crisp as too noisy and painful to my ears.

I did have investigations but like your daughter eyes and ears healthy .

Must be nerves from the brain mis firing affected.

Give her more time .

My daughter is s wheelchair user after late diagnosis of PA / b12 def. Her autonomic system damaged so got POTS.

She can walk.

But can't stand on the spot or bend so everything raised and a sit down shower.

Impossible to avoid standing when out especially

I do hope with more time your daughter makes more improvements.

Pysio

Eye exercises may help

More tests to check pressure in ears.?

You can't 'overdose ' on B12 but sometimes repair needs time

[Corney23uk in reply to Nackapan]

Thank you so much Nackapan, that is so helpful. I sent her your response and she found it reassuring to know that others know how she feels and have been through it. It is very much appreciated.

[topazrat]

My hearing is a rule unto itself. I have no idea if it is B12 related or not though. I went for a hearing test, as my daughter said I had the TV up loud. Yep, you need hearing aids. Come back in two weeks and we'll do another test and get you started. Went back and my hearing was totally normal! It keeps doing it, getting worse, then better and it isn't due to a cold at the time that its bad. Its a total mystery that nobody knows the answer to.

[Corney23uk in reply to topazrat]

Sorry for the delay, New Year has been very hectic - this is exactly how she feels. Some days she hears sounds and other days she doesn't. The Drs she is seeing are very confused too.

[Narwhal10]

Hi Corney23uk,

I am so pleased for your daughter with regards to mobility. Yay. I suggest that she apply for copies of her notes from her Integrated Care Board, Health Board or Trust. So, that NOT only is she is control of her Care and Treatment but her Medical Data.

She has a firm diagnoses of P.A. and she is relatively young. On her notes should be the time, date and by who the diagnosis was made. These figures feed into other areas AND there is a massive Myth that P.A./B12D occurs in older people. It is seen throughout research.

Now, it may simply be :-

1) A case of the ears and eyes needing more time to heal as opposed to whacking in more Hydroxycobalamin.

2) More Hydroxycobalamin is required.

So, as a Scientist I have presented 2 Theories. The only way your daughter will know is by ‘testing the theories’.

John Hunter, a Scottish surgeon, advised his student Edward Jenner, ‘Don’t think the experiment, try it.’

I am also a Midwife with P.A. so, I listen to my body and inject when it needs it written as PRN which means ‘as and when’. The Biological Response to medication can be astounding.

Best wishes.

🐳

[Corney23uk in reply to Narwhal10]

Sorry for the delay, New Year has been very hectic. Thank you Narwhal10, she does have copies of her notes as they are computerised - but you did send me into a panic as they could be 'lost' - so I have taken the time to print them. When she was originally admitted to hospital, she was told that B12 deficiency only happens to older people....something that she found quite upsetting - so she would now argue with anyone that tells her that. She plans to do some experimentation with doses in the coming weeks.

[Litatamon]

I had double vision, decreased vision; intense light & noise sensitivity. All alleviated with my loading doses in 2019. However, a bit of the light & noise sensitivity remain, but nowhere near the levels before t he deficiency was found. Both were truly painful.

The increase in vision was substantial with injections, over time.

[Corney23uk in reply to Litatamon]

Thank you Litatamon