PAS : Just wanted to now is anyone with... - Pernicious Anaemi...

Pernicious Anaemia Society

31,947 members23,085 posts

PAS

Shellbes profile image
20 Replies

Just wanted to now is anyone with pas forgetful

I’m 42 and become very forgetful but have pas just wondering if it could be due to this it’s awful and getting really bad ?

Written by
Shellbes profile image
Shellbes
To view profiles and participate in discussions please or .
20 Replies
Sallyann8486 profile image
Sallyann8486

Yes I am, I forget words for certain things and names, really annoying.

Shellbes profile image
Shellbes in reply to Sallyann8486

Ok do you forget things that’ do and done a few hrs before I’m doing this more so and getting really worried about this ?

Sallyann8486 profile image
Sallyann8486 in reply to Shellbes

I loose track of what I am doing! Xxxx

JanD236 profile image
JanD236

Before I had adequate frequency injections I would often forget what I was talking about half way through a sentence. I thought I was well on my way to dementia!

I thought I was going insane when this started happening to me a few months ago. I was diagnosed in June. On a bad day I’ll forget my point mid-sentence or thought, forget what someone literally just said to me, or forget why I’ve opened the fridge when 3 seconds earlier I knew exactly what I needed. On a good day I forget names or words randomly and often. I’ve got a fairly demanding job and I’m still in the process of developing a coping mechanism so that I can stop forgetting to follow through on actions from meetings 🤦🏽‍♀️ It’s a horrible feeling and it’s made me feel awful and depressed. Hopefully we all get it sorted soon!

Shellbes profile image
Shellbes

Thank you this helps I thought I was going mad it’s getting really bad now and I’ve always been good at remembering things until the last few months I’m going to have to go see my g.p I’m having a jab once a week now and not getting any better b12 is still low and I’ve been having the jabs now for the last 8years + thank u again x

in reply to Shellbes

Long before I knew I had it I used to joke that if I didn’t write something down there and then it wasn’t getting remembered. Little did I know! I’ve just fought to get more loading jabs and more frequent jabs from there, you know your own body and what’s not right so keep at it x

Narwhal10 profile image
Narwhal10 in reply to Shellbes

Hi Shellbes,

Sorry that you are suffering. It’s quite concerning isn’t it. Good that you are going back to the GP, maybe they need to up the frequency.

Wishing you well x

Narwhal10 profile image
Narwhal10

Erm 😒 sadly yes, I forgot what a W looked like whilst attempting a cross word and the worst was I couldn’t remember which door was my front door, trying to get out. I live in a flat so no that’s the bathroom, no boiler, cupboard, spare bedroom. 🙊

Good morning shellbes.yes it goes with the insomnia lol

I used to blame my head injury for it all and then realised once I’d started the b12 injections it was the deficiency that was causing all this horrible stuff we go through.Stress of any kind seems to deplete me so as I’m in the process of doing a house move I feel rock bottom with everything,last night we went for a meal in a Turkish restaurant I couldnt have cooked if you’d begged me to lol I was so tired,when it came time to pay I couldn’t get my head around the card reader and punched in £80 for the tip instead of £8 Lol luckily the waiter questioned it.

I can remember things I did 20 or 30 years ago but struggle with short term so don’t ask me what I was doing 2 days ago that’s gone when I’m low.

You need to listen to your body and when you get like that it’s time to increase your shots.my new sharps bin is packed away at new house so I’m going to get it today because I’m 3 days late for my injection and it’s really noticeable I’m back to having my garbled conversations with hubby lol.dont worry it effects us all just make sure your getting enough shots to get you past it,makes such a difference .good luck x

in reply to

It’s interesting you say stress of any kind depletes you. When I was 15 I had a real low point and have had a few bouts of what I understood as depression since then. All kicked off by various stressful events. I’d take antidepressants for a while then come off them when I was coping better with life. I always said that my depression was a chemical imbalance in my brain rather than actually being depressed all the time but nobody ever believed me. Looking back now, that’s exactly what was happening. When I went through a stressful event, my body was triggered into a shutdown response almost because it didn’t have enough to run off. Since diagnosis everything I’ve felt for 25 years has slotted into place

in reply to

Yes your right Tina I had to endure electric shock treatment after my last birth and it was barbaric,I knew even all those years ago it was simply baby blues and hormonal,the fact I’d haemoraged really badly after the birth tells me now I was b12 deficient and that’s dictated the rest of my life since then,On and off antidepressants and god knows what else when all I needed was vit supplements all these years of torture,if only I knew a fraction of what I know now.Xx older and wiser right enough eh?

Narwhal10 profile image
Narwhal10 in reply to

I’m so sorry to hear about your horrific, unnecessary and harmful treatment.

I have been sectioned for mania. I vomited most days and obviously had bowel problems. I was just offered anti sickness injections. Nobody realised that I had coeliac disease which had been identified the previous year so lovely hospital food. I was just given antipsychotics and the dose kept increasing.

in reply to Narwhal10

So sorry to hear that.Its shocking what we have to go through because people just don’t do their job right.I actually moved house to get away from them and I never went near doctors for years I was so young and scared to death of them.Now I question and research till I’m weary of it because I’ve never been able to get that trust back and still they let me down so much ,wether I go nhs or pay private makes no difference I rarely meet anyone that’s a pay grade above tosser.Xx

Narwhal10 profile image
Narwhal10 in reply to

I do not blame you for moving and avoiding. Proper B12 education should be mandatory and yearly study days compulsory.

I’d restarted eating gluten as I didn’t realise it was so detrimental. I’d seen a private neurologist, then ended up on a psych ward. I’d totally forgotten about gluten but knew I was physically ill.

Yes, I love finding out researching stuff.

Oh 🤣😂🤣 that’s a great expression that I may have to use - The pay grade above.

Xx

Nackapan profile image
Nackapan in reply to

Exhausting when well moving!! Hope it goes well and tiu enjoy the garden. T c

£80 tip 😯😅must've been good 😂

in reply to Nackapan

🥴😂

Emmers5 profile image
Emmers5

I would have to ask my children multiple times where we were going when I was driving them somewhere because I kept forgetting. It is unnerving

BiancaB12 profile image
BiancaB12

I too had awful brain fog before I realized I needed more frequent injections. Now I feel much better, injections every 3 days with a higher concentration than before. But irritability and memory issues return if I miss even one dose. It helps to make sure you are getting enough; some people need more frequent doses. Hope you feel better soon!

Shellbes profile image
Shellbes

I’m going to try and do two jabs a week see if this helps with my forgetfulness if not then back to my g.p I can’t go on like this it’s awful .... no matter how had I try this lockdown is making my own health drop badly x

You may also like...

New Survey for PAS members

blog mentioned that there will soon be a survey for PAS members on the members page. I think it's...

PAS, NICE and guidelines for PA.

The PAS have had a meeting with NICE about getting proper guidelines for the diagnosis and treatment

Latest PAS proposed Reserch

Have just read about a factory making 1000mcg oc cynocobalamin in the UK so quality can be assured.

PAS blog by Professor Wolffenbuttel.

I utter the word b12. So now I feel it’s an out of bounds subject and just manage my situation as...

PAS : Long covid symptoms.

courses those that get awful respiratory problems. I didnt even realise loss of taste could be a...