Update - 8 weeks of injections and so... - Pernicious Anaemi...

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Update - 8 weeks of injections and some new symptoms

TACCT profile image
9 Replies

Hi, I am having injections from last 8 weeks and have seen improvements in some areas. Blurred vision has improved and so does night vision. But shimmering effect is still there. Eyes try to move around the focused object and it feels like words have slight to and fro motion. This is probably the strangest symptom which I failed to explain to eye doctor and a neurologist. Both of them shook their heads in disbelief because outward examination of eyes do not reveal any abnormal movement :)

Improvements in balance. Feel less tired unless I exert too much. Still have mood swings but not as bad as previous.

There is this weird tightness around ears/neck/forehead area. Previously I had this around entire scalp so it seems like it has moved downwards, maybe an improvement? anyone else got this?

And from last couple of days I sometimes get tingling in different body parts, totally random areas. Occasionally it feels like tingling deep inside the ear, you want to prod but there is nothing on the surface :) Strange vibration around nose and back of neck which is slight but noticeable.

I am planning to reduce twice a week injection to weekly injections or should I continue for some time with current frequency?

Am taking a multivitamin and omega-3 with b12 shots.

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TACCT profile image
TACCT
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9 Replies
clivealive profile image
clivealiveForum Support

Some symptoms my well appear to get worse before they get better with new ones appearing as the B12 starts repairing the damage.

Keep up the good work monitoring yourself and I wish you well

Hanneke12 profile image
Hanneke12

"shimmering effect is still there. Eyes try to move around the focused object and it feels like words have slight to and fro motion. This is probably the strangest symptom which I failed to explain to eye doctor and a neurologist. Both of them shook their heads in disbelief because outward examination of eyes do not reveal any abnormal movement" - I HAVE THIS! And it especially gets unbearable when contrast between colors is big. Like black letters on very white paper. Or worse: green on red, brrrr...

Have you tried glasses with colored lenses (Colori glasses)? They helped me.

(And no doctor could find out what was wrong either. Brain MRs, EEGs: nothing. So probably a B12D-affecting-optic-nerve-thing?)

TACCT profile image
TACCT in reply to Hanneke12

Hi Hanneke12 yes you are right about contrast thing. This is why I set my display to low temperature which makes everything slightly reddish but bearable. I tried glasses but they distract me because of moving focus. I too had brain MRI but revealed nothing but my eye doctor says nerve inflammation and I saw few papers which discuss optic nerve problems due to b12

Hanneke12 profile image
Hanneke12 in reply to TACCT

I got sheets of purple transparent plastic, put them over what I am reading (hardcopy), which helps. Hope the B12 will somehow repair the inflammation or nerve damage though!

ps. I've been living with this symptom for 20 years or so, don't despair, somehow brains can also adapt to not see it so much (neuroplasticity). It doesn't bother me so much anymore. Like tinnitus...

Nackapan profile image
Nackapan

I have the scull tightness and across my forehead. It has lessened but never gone. My glasses always feel too tight. (They are not)also scalp sensitivity when washing or brushing my hair. I found static allodynia described it well. I would stick with your regime until you feel no more can be done at that frequency. I'm 7 months in and having 2 weekly injections. I haven't got the vision problems you describe but everything else familiar. I get floaters and vision goes down or I simply can't bear my glasses on any longer . Gkad improvements being made. Keep a diary. Always useful . Take care

Baggy8 profile image
Baggy8

A very good friend of mine who has no B12 issues, suffers from dyslexia. She couldn’t read until her 20s until her diagnosis because of the words swimming so badly as she put it. For her, she uses special coloured sheets, however was offered the coloured glasses as mentioned by Hannek12. They have been transformational for her!

deniseinmilden profile image
deniseinmilden

I'm baffled as to why you are contemplating reducing the frequency of your jabs?

If you need it, you need it. Either keep going as you are or increase your jabs until you are completely well and deficiency-symptom free. Symptoms are your body's way of telling you that something is wrong that needs fixing.

It sounds to me like you are only just getting enough to start your healing process.

I still notice improvements after 4 years of regular jabs.

TACCT profile image
TACCT in reply to deniseinmilden

Hi deniseinmilden thanks for the heads-up. You are right I should stick with current regime for now and monitor the progress.

deniseinmilden profile image
deniseinmilden in reply to TACCT

Because all vitamins and minerals play such critical roles in our body's functioning and they all interact, with some causing problems if things get out of balance, the health professionals do not have time to learn about each one so B12 often gets "tarred with the same brush" and is considered to be a problem in excess. However B12 is safe even at very high levels and frequencies - unlike some other vitamins and minerals - and is so essential for DNA synthesis, nerve function and energy release that nothing works without it so you need to get to the right level for your body.

Don't worry if it sounds a lot - there are lots of us who SI daily and some who need 2 jabs every day to stay well.

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