What constitutes neurological symptoms? - Pernicious Anaemi...

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What constitutes neurological symptoms?

kirsten555 profile image
7 Replies

Sorry if this info is already to be found - the trouble is there's so much information on this wonderful site that sometimes it's hard to locate it!

I understand that neurological symptoms include tingling and numbness in limbs, paralysis, etc, but I wondered if the brain stuff also counts as neurological? I've had the horrible weird feelings that you get with B12 deficiency - feeling unreal, as if you're in a dual/parallel world, like there are other things going on that most people can't see, etc. I've worried at times that I'm bordering on becoming psychotic, but I am always aware that the things I think and feel aren't actually real, and only happen because of my deficiency. I've also had the dreaded brain fog (initially, before diagnosis, I thought I had early onset of dementia) and inability to concentrate for any length of time.

I just wondered if this side of things - the mental issues - are part of the neurological stuff, or something else? I've been self-injecting initially once a week, since March, then I upped it to twice a week at the end of April as my initial improvement rapidly slowed down and then halted. And now I'm wondering if I should be doing it every other day, as advised for neurological problems. I must add that I don't get any of the tingling or numbness, thank goodness!

Any advice would be gratefully received. No point asking doctor - he said the injections were simply a placebo. He knows I self-inject but doesn't approve. Many thanks in advance for any advice.

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kirsten555
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fbirder profile image
fbirder

The recommendations for neurological problems is injections every other day until there is no further improvement.

There are good reasons for this. Your nerve damage may be irreparable, or it may be caused by something other than a B12 deficiency. Either way, continued frequent injections would be pointless.

From what you say it sounds as if you are showing no further improvement,

The brain symptoms can take a long time to diminish noticeably.

I think I would start looking for an injection frequency that keeps you maintained at the optimum level. Try keeping a symptom diary and log when you have an injection. Try to extend the time between jabs and see if any of the symptoms obviously get better then worse.

You should be able to find a frequency where you inject before those symptoms start getting worse.

kirsten555 profile image
kirsten555 in reply to fbirder

Thanks so much, fbirder. So do the brain/memory/weird feelings count as neurological symptoms?

fbirder profile image
fbirder in reply to kirsten555

There's a BMJ review article (can't find the link right now) that separates them into Brain (impaired cognition, irritability, depression psychosis, illusions) and Neurological (the tingling, numbness, loss of reflexes).

kirsten555 profile image
kirsten555 in reply to fbirder

I see. I'll have a hunt around for that article - thank you! I just wasn't sure whether the injections on alternate days would be okay for me, if my symptoms aren't neurological. Thanks very much.

fbirder profile image
fbirder in reply to kirsten555

Oh, it'll be OK to inject that frequently. But you may be subjecting yourself to unnecessary hassle, pain and expense.

Gambit62 profile image
Gambit62Administrator

B12 is used for the maintenance of the lining around nerve cells - and damage to that is most likely to be the cause of tingling etc. If the lining is damaged them B12 can help to repair it.

It is also used in resetting neuro-transmitters - which carry messages between cells - and this is likely to be the mechanism involved if you are experiencing neuro-psychiatric problems such as anxiety, depression and the psychosis you mention. This isn't something that is going to be repaired over time so you need to find the frequency that keeps your levels where they need to be for this mechanism to work efficiently.

kirsten555 profile image
kirsten555 in reply to Gambit62

Many thanks for that info, Gambit62 - much appreciated.

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