Exhaustion: I'm moving around a bit... - Pernicious Anaemi...

Pernicious Anaemia Society
21,173 members14,766 posts

Exhaustion

Nackapan
Nackapan

I'm moving around a bit more on the house. The exhaustion continues. Legs so weak. Also vision still down and can't watch TV. Light sensitivity continues.

I'm grateful some improvements and sleeping better with less u comfortable symptoms.

It's simple so slow though. Does this ring a bell with anyone?

Due first maintenance B12 injection 11th January. Could get one sooner. Taking B12 folic acid vit c and d.

Copied into neurologists letter to G.p

He wants an Mri on cervical-thoracic spine

Also says B12 defiency is also known to cause neurological deficits including myeleopathy but this would not explain all of her symptoms? I think he referring to weaknees. Also encouraging me to try amytriptyline. I am sleeping okay now. I think he is thinking anxiety! ! Yes I've some. But everyone has. I've never felt this fatigued before or had such a pale colour. Ashen on doing anything. Even the telephone leaves vibrations in my head. So some improvement 1 month post loading doses. I still am having the odd horrible spots from injection . I take it there is plenty still in symptom as getting new spots!

7 Replies
oldestnewest

Hi Nackapan , b12 tablets will not help as you can’t absorb them . You need to self inject like most people on here are forced to due to doctors not following the guidelines . You need alternative day injections until no futher improvement . I know it’s daunting but you could start off with Sub cut ( tiny thin needle ) . I hope you feel better soon, take care .

Nackapan
Nackapan
in reply to Annnon58

Yes it keeps coming back to self injecting. I don't know if I can absorb any B12 though. I got very low but wasn't taking supplements. So I thought I'd try

Annnon58
Annnon58
in reply to Nackapan

If you eat meat , animal products and still have a low level of b12 then you can’t absorb it in your gut , therefore the only way to get b12 to your cell level,is via injections , and due to your nurological symptoms you need them much more frequently than every 8 weeks . If you tried SI it can do no harm as b12 is water soluble and just a vitamin , any excess is excreted in urine . Order yourself some tonight online before it’s too late with xmas post , it will be the best xmas present , controlling your own recovery . Many have given you the same advise , I urge you not to ignore it . You will get lots of guidance here on where to / what to order etc . It will take time and patience but you will recover if you follow the guidelines . All the best .

Nackapan
Nackapan
in reply to Annnon58

That was meant to read I could not get more injections. The gp said I did not fulfil the criteria as the blood test showed ni anti body for intrinsic factor so don't have peracious anaemia or megoblactic. I did arguenjoy on the neurological symptoms but he stated I was so ill to wait for B12 in my system to keep working

beginner1
beginner1
in reply to Nackapan

The antibody test is very flawed, something your GP does not seem to know. You still could have PA.

My GP's were equally difficult, I now self inject.

Annnon58
Annnon58
in reply to beginner1

Exactly , the IF test often has false negatives .

Nackapan
Nackapan
in reply to Annnon58

Thanks for all replies. X

You may also like...