Am I expecting too much too soon? - Pernicious Anaemi...

Pernicious Anaemia Society

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Am I expecting too much too soon?

ShirleyMurray profile image
β€’8 Replies

Hi, hoping for some thoughts....I know everyone is different, but I'm a little concerned that having started on daily injections of hydrocobalimin, my 'burning feet', have of over a period of 5 days....improved slightly, regressed, improved more, but today back with a vengeance !

It's early days, but with this type of neurological problem, does this sound 'normal'?

I had hoped, improvement would be an ever increasing positive result!

I'm also taking, potassium, magnesium & methylfolate.

Any thoughts on this much appreciated. 😊

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ShirleyMurray
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8 Replies
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CarpaBob profile image
CarpaBob

Hello, sorry I am only just starting treatment so can't answer your question yet though I am aware some people get worse before they go better. Can i ask what made you decide on daily injections?

ShirleyMurray profile image
ShirleyMurrayβ€’ in reply toCarpaBob

Thanks so much for replying. Yep, after reading a lot & watching You Tube video, 'Diagnosing & Treating B12 Deficiency', I decided that as my GP was clueless, I needed to find how to treat myself.

i also filled out a questionairre on b12d.org site, which was hugely helpful.

Also, requested info on this PAS site, where to look to source b12.

I have nothing to lose, and hopefully, my life back to gain! πŸ™‚

Secondchance profile image
Secondchance

Yes people commonly report worsening symptoms in early stages on this board. If you have sorted co-factors then it may well be the nerves starting to work again. The same thing happened to me on alternate day injections. The important thing is to keep a note of all symptoms in a diary to see what is improving and what is worse. Overall if there is an improvement is the important thing. I stuck at it and was glad I did. Be careful not to overdo things on good days like I did e.g. Powerhosing!

ShirleyMurray profile image
ShirleyMurrayβ€’ in reply toSecondchance

Oh thank you so much :) it's very reassuring to hear from a fellow sufferer that has had similar experiences. Wise words about the diary....& NO power hosing or equally daft idea.. Haha πŸ˜‰

CarpaBob profile image
CarpaBob

B12d group have an app on Android, pc and apple. It's 99p and you can record symptoms, medication etc and display graphs to compare symptoms.

ShirleyMurray profile image
ShirleyMurrayβ€’ in reply toCarpaBob

Wow! I had no idea! Thank you so much....I will get it now :)

It never ceases to amaze me, how different people find out different things...this is where this forum comes into play so brilliantly, as there sure isn't any book I've read that gives the vast pool of information, that we can access here!

Really grateful to you....😊

CarpaBob profile image
CarpaBobβ€’ in reply toShirleyMurray

Your welcome πŸ˜€ i came across it last night just reading a bit more on the b12 site. They have three apps if I remember rightly, the one i just got last night is called b12 deficiency

Mollymoo56 profile image
Mollymoo56

I've had pernicious anemia for over 15yrs Ime at the stage now where I get my injections every 2 months but Ime only getting 1/4 of the way into the 2 nd month and that tiredness sweeps over me some times I struggle to get out of bed Ime sure you know what I mean not sleepy tired but worn out with not a bit of energy I also get numbness in my feet my gp has just given me a mot on my bloods to see what's going on πŸ€”

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