Vision disturbances : Hi, just had my... - Pernicious Anaemi...

Pernicious Anaemia Society

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Vision disturbances

Myshk profile image

Hi, just had my first injection today. Had to go private as GP refused. Have had an array of neuro symptoms since July and unable to work since then. I have done lots of research myself and came across the PA website. Since my MRI came back clear and my symptoms eased off a bit when I started oral b12 spray some 2 months ago I thought my problems may be b12 d - Initial level 240. My main symptoms were poor vision especially on my right eye, terrible strain on the eyes, light sensitivity, dizziness, debilitating brain fog and fatigue, numbness in fingers. I have been advised that injections would be the best option. After a long battle GP ordered IF and homocysteine and both were normal. Never had active b12 though. I’m feeling really weak and tired today after my first injection with hydroxo. My unstable vision came back, patterns and things I try to focus my eyes on seem to be vibrating. Is it normal to feel worse after injections? Does it get better after a while? Also, doctor at the private clinic said one injection per weeek is enough? I have read that I should be getting them more often to start with... if i stick to obce a week should I keep taking the spray between injections?

9 Replies

I suggest self injection, then you can control everything yourself . Yes ,the very least you should be getting is the loading doses which are 6 over 2 weeks . Then one injection every other day until the neurological symptoms stop improving . Then at least one injection every 2months . , or as often as required to keep symptoms at bay

A negative test for Intrinsic Factor Antibodies is very unreliable to say the least . At least 50% of those people who test negative do have PA .

You cannot overdose with B12 , so no worries on that score . It’s difficult to get good treatment for P.A. in U.K. The medical profession has little or no understanding of it . We have to help ourselves .

Self injection is ideal . There is a device to use if you are needle phobic . I’m rushing this off— I’m abroad and I have a long journey to the airport . It’s easy to obtain B12 ampoules from German online pharmacies. Also cheap . If you buy in bulk an injection need not cost much more than £1.00 ! In a rush -best wishes .

Myshk profile image
Myshk in reply to wedgewood

Thank you very much for taking the time to reply to my post even though you were rushed. Yes, I am considering ordering from Germany and start SI. Private injections are expensive. I’m quite surprised that IF result is not reliable but thank you for this information I will keep that in mind. Is there any other test for pernicious anaemia which is more reliable and worth doing? All the best on your travels :-)

I take it you have had your eyes, folate and iron levels tested as OK.

The NHS "one size fits all" B12 treatment guidelines do not suit everyone and if I had the chance to start my treatment again I would have weekly jabs, as the Dutch recommend, because I believe suddenly flooding your system isn't necessarily the best for it, especially if you have autoimmune problems. Your private Dr may be surprisingly knowledgeable and it's worth asking them about it.

The processes of DNA synthesis, nerve function and energy release that use B12, all use many different vitamins and minerals which you are likely to need to make everything work properly.

Therefore many people benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron too.

As you get more B12 you may become short of something else that is used up and your additional symptoms may be due to that. (For instance my eyesight goes off if I am short of folate and magnesium but different people are affected in different ways).

Basic supermarket multivitamin and mineral supplements and folic acid tablets are as good as any and are worth trying. Keep going with your spray as well and see how you get on.

I also after having many neurological symptoms had a loading nhs dose of injections. CT scan ckear and MRI now seen by a neurologist okay

Alot of symptoms have subsided but I got alot worse first. It's nearly a month now and I'm left with light sensitivity and what you described with jarring sensation. Some days vision down as well. Exhaustion remains still .I've read the optic nerve can suffer with low b12 but can resolve.

I've got an injection 2 months now after last. The neurologist sorted thus.

I wonder if oral supplements will help to get through to next injection? ?

Or everyone repairs on a different order and timescale.

I'm grateful to be better than I was but still housebound and evenings miserable in yhe semi dark not able to read or watch TV.

I keep being told I need more patience but bad symptoms started 1st October.

So like you what next time self help.hope you get what helps you

Myshk profile image
Myshk in reply to Nackapan

How would you describe your vision problems? I have seen in many posts here on the forum people say it feels like it’s unstable, vibrating and they are unable to focus their eyes. I’m being told it’s ok to stay on oral supplements between injections so I’m going to continue with my spray. Are you taking magnesium? Is your iron ok? How about folate?

Nackapan profile image
Nackapan in reply to Myshk

Yes my bloods okay. Still waiting for magnesium to come only.

My vision is down some days. Feels like my glasses are too tight at the sides and the prescription is too low. Glasses have a film . They are clean and prescription new.

Light sensitivity makes me feel disorientated and irritable. I tried my prescription

sunglasses which worked to a degree. It makes for miserable evenings . Daylight okay it's artifical lighting and the TV. My head gets buzzy and I feel I would get a headache if I don't go into a semi lit room. In the waiting room in the hospital it made me feel agitated and nauseated. It's almost as though I've had those drops in to dilate your pupils.

I have to give myself regular breaks of closing my eyes . My forehead buzzy and aches for a while. I've read the optic nerve can be affected . Hopefully can resolve with b12 input

Myshk profile image
Myshk in reply to deniseinmilden

My eyes were tested by ophthalmologist last week. There are some changes in my optic nerve in the eye which got worse when my symptoms started but they said it’s not serious. I wonder if that may have been caused by b12d? My folate is in the low range around 7 and iron is low too ferritin 26 after months of supplementing. I am taking magnesium and multivitamins. I will probably order some hydroxy to SI but yes I think you may be right that too much may make me feel worse especially that I’m not feeling great after the first dose. Some on the forum say it’s a good sign to feel worse to start with and it’s an indication that it’s working. I hope this is the case. And yes I do have autoimmune issues, I’m coeliac. Thank you very much for sharing your knowledge and experiences with me.

Not really any point in having an active B12 test. That looks for B12 in the form that can enter the cell. Your homocysteine test looks at how much B12 is actually getting into the places in the cell that it needs to be. Your result says that there is enough B12 getting there.

I see that you have coeliac's. That will hinder B12 absorption itself, so the question of PA or not PA is really irrelevant. You have something that can cause absorption problems.

So the only way to tell if you are B12 deficient is to have the injections. If you improve, that was the cause. Follow wedgewood's advice on how much and how often.

Myshk profile image
Myshk in reply to fbirder

My homocysteine was fine. I’m still feeling really bad after the first injection yesterday. I’m very weak. I could just sleep all day long and I’m experiencing muscle weakness too. My vision is bad. I would say my symptoms were much better before the injection. I really hope this is a sign of healing. Hope you will manage to resolve your problems with vision.

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