Pernicious Anaemia Society
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Never new wat pa ment

I had my bowel removed aged four and remember having bad habits with my jaw and eye twiches I pulled eyelashes out I even used to chew my sleeves on my coat .I think I had b12 injections from aged 8 and have bin on them ever since I still get eye and jaw twichin .I new I had panemia from a child but never new wat it was ,I was made aware recently that iv got bad anxiety as I apparently go dead fast wen talking and chang e stories in a conversation . I thought the butterfly's I have wer cause I felt giddy as always bin OK in social situations. I found out that wat iv bin like all my life is systems ov my pa ,because iv bin made aware its like a tidle wave my habits r worse I'm warey to speak in case I look wierd to others. I think iv got nerve damage from delayed diagnosis but wen I ask family or iv its in my records I get nowere I feel upset that at 43 iv just found the connection by chance threw searching about anxiety .I'm in a bad place at minuite getin my head rnd it I want try the CBT but think it will b hard as iv always thought its just me who's hyper and have to change a lifetime ov thinking . any advice welcome x

3 Replies

Sorry to read that you are in such a bad way - may just be that you need more B12 - though unless you have the financial resources to do it yourself - getting that from medics can be very difficult.

You could try keeping a diary of your symptoms as you may notice that things are better just after a maintenance shot and then just get worse until the next one.

It took me the best part of 9 months after being told I had low B12 to work out what it meant and at 52 I now reckon I'd had symptoms for years. Had exactly the same with my GP and anxiety/depression but they actually went when I started treating myself.


A lot of your systems do not point towards B12 deficiency, there could be another cause as well as b12. Sounds similar to aspegers syndrome.


Considering all you've been through, it sounds like you need a really good gastroenterologist on your team? I have no idea how to help, but just wanted to say good for you- keeping on looking for answers. Sounds like you've had a tough road and most people on here know how it feels not to be 'heard'.


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