Pernicious Anaemia Society
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After a further 4 loading doses over last fortnight ,second lot( think I scared doc cos b12 back down to 338 after 3 months )he referred me to neurologist ,as appointment wasn't until Jan 22 ,Am going private tomorrow ,mainly cos my brain like mush ,and dizzy spells scare me .Will take letter I wrote to my doc ,and symptoms I had over last few months, anything else that you think may be a good idea to take with me .My friend is also coming with me .Doc still not diagnosed me yet which after starting point of 132 and 4 loading doses, after 3 months 338 surely that evident Everything crossed that he can sort this out, and will be doing a bit of praying,Don't know how my son lives with this with no treatment ,he diagnosed middle of last year with pernicious aneamia but won't go see doc Over past month have got him on sub lingual and multi vitamin tablet and he seems calmer May get him to docs eventually he is 34 by the way ,don't think he has neuropathy like me ,but has phychosis and paranoia.

5 Replies

Hi May61. Well done for persevering with your GP - recall what a battle you've been having.

Hope your GP is. It stoping at the loading doses - you really need every other day until no further improvement, bacause of your neurological symptoms.

Goodness only knows why your GP has not yet diagnosed you - a shocking mystery.

What else to take - fbirder's summary of guideline (in the third pinned post) very useful. Contains all relevant information and short, so your neurologist may be inclined to read it 😀. And perhaps the NEAQS guidelines in the second pinned post (short, and about treating symptoms and not blood test results).

And good that you're 'keeping at it' with your son. Like you, don't know how he's staying on his feet with no treatment for his PA / B12 deficiency. If he doesn't have neuro symptoms now, he's likely to get them eventually as his body store of B12 (if he has any) is depleted even further. Unfortunately, it will eventually run out completely. Sublinguals may help in the short term but he's unlikely to get enough B12 from this method (though this is not unheard of). And psychosis and paranoia can be symptoms of B12 deficiency, so perhaps he's not getting away as lightly as he thinks.

Really keeping my fingers crossed for you...hope you get a knowledgeable neuro...let us know how it goes 😀 x

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Thank you so much for your support Great to know people out there that care


Hi may61 16 days ago you asked about whether or not you should take Folic acid whilst having the B12.

Are you and your son doing that?

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Got some in the cupboard cos know you only take it when b12 improved so had two tablets this week Hav a multi vitamin daily and cod liver oil Gave son multi vitamins to take daily with pro bio tics and sublinguals But keeping hold of folic acid cos don't know what his bloods are and think they can make matters worse if B12 level not increased

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It doesn't sound like you are getting enough b12. I had terrible neuro issues and injected daily (sometimes twice a day) for over 2 years. I have cut back to once a month and when I feel stressed sometimes once a week.


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