Recent conversations about B12

[Cherylclaire]

1) Found out that one of my cousins also has B12 deficiency recently diagnosed, has had 6 loading injections and Dr put her on 2-monthly, but told her if that was not adequate, she could have 1-monthly injections. Is the wind of change beginning to blow our way? I'll write to her and recommend this site for the support and advice you all offer.

2) Got talking to a lovely couple on the next table in a local restaurant last night, mentioned my B12 deficiency and they said a lawyer friend of their's had just been diagnosed and is having loading injections. It occurred to me that she might be attending the same practice as me, and I highly recommended my doctor if she needs any help, since she has been so very helpful to me.

3) Had a really frank conversation with the nurse today about what this all feels like from the pointy end of the needle. This came about because I recognised that my hard-won reloading injections would not be allowed to continue forever, but that my aim would always be to regain all that I was previously and not settle for less unless I have to. At present, even on my best day, I would be unable to return to work: that's not enough, not with 8 years left to retirement! How the lawyer (2) is coping I don't know but I wish her well.

What is my point? Not sure, perhaps just that we need to talk more. Take care

[Foggyme Administrator]

Hi Cherylclaire. First, how lovely that you feel able to recommend this site to others. Hurrah 😀.

Second...the winds of change...would be marvellous and not before time!

But just a thought...if your cousin has neurological symptoms, she should have B12 injections much more frequently than monthly. After the loading doses, it should be given every other day until no further improvement...sometimes for many many months.

If her GP has put her on 2 monthly injections following loading doses, it sounds like she's jumped a step (the every other day step) in the neurological regime.

And of course, the same goes for you...if you have neurological symptoms.

The right amount of B12 is the amount that reduces symptoms and makes / keeps you well - so you're right to keep at it.

And you're right...this is certainly a very good place to talk...and maybe whip up a storm to help with those winds of change...

Take care 😀

[Cherylclaire Forum Support in reply to Foggyme]

You are right of course, Foggyme, about neurological regime. I've just this minute posted a long letter to my cousin. Will ring my aunt and get her on the case directly: we all need someone else to help out, particularly at the beginning when unsure and fatigued. The beginning bit is so vital to get right isn't it?

As for me, I'm on my 14th injection (reloading after 1st regime failed to help me) and still plenty of troughing and peaking. I'm neurological in terms of brain- fogs, moods, cognitive problems, solitude seeking, sensory overload and confusion when at low ebb - but have been lucky with no mobility/gait problems. So not ready for a return to work yet, but able to have some happy quite ordinary days...much appreciated lately!

Luck and love, Foggy, talk soon

[Foggyme Administrator in reply to Cherylclaire]

Hi Cherylclaire. Oh yes...you're so right about help and getting it right in the early stages 😀. I got mine here...👍.

Really pleased that you're having some happy quite ordinary days...exactly what I would wish for all.

Fog...solitude...sensory overload..yep, know how that makes you feel 😖.

It's great to hear you sounding so positive and impressive that you're already helping others - we're all for that here 👍

Hope things keep improving and that you're able to return to work - when you're ready 😉.

Love and luck (how lovely)...and back at you too.

Take care, be good to yourself, and let us know how it goes (for your cousin too) 😀 X

[Penni]

I was first diganosed with PA in Jan 10 when my blood count got so low I went green (literaly). I have since had 2 loading doses and been left with permant damage too the nerves in my feet, lower legs and hands, as well as a curve in my spine. Due too my nerve damage I'm now unable too work but do volunteer at varoius community groups. 2 hours is usually about all Ican mnage before needed too rest after and quite ofter have a sleep in the afternoons as I get so tired and quite often need a day during the week as well.

[Cherylclaire Forum Support in reply to Penni]

Penni, you sound like a real trooper, and I'm glad that you manage to get out and doing stuff. Voluntary work is still work, and more important to others than many paid peoples' contributions. A lot of us seem to need that afternoon nap or just quietness in order to keep going, if possible.

Tell me more about your loading doses, and about what treatment you are getting now. Sounds like not enough to me. When you say loading doses, do you mean two lots of loading sets of 6 injections? More?

You, also, should have been given injections every other day until no more improvement possible, right from the beginning. See Foggyme's reply to my post.

[Gambit62 Administrator]

lovely to hear that you are feeling more positive.

[Cherylclaire Forum Support in reply to Gambit62]

Have to make the most of it when it comes along, Gambit, been so up and down -but noticing things like hair not falling out, not needing a nap in the afternoon just to get through an average day, coping with brain problems better although they haven't yet gone. Coped with Nando's on Saturday night- a big improvement although doubt if dietician would see it that way!

Yes, okay, as far as my broken arm goes, MRI revealed that my rotator cuff is torn.....so guess what's top of my Christmas list?

(CLUE: think Clivealive would like this one!)

[Penni]

My first loading dose I had 7 injections, my second I had 9, as well as 11 yellow vitamin infusions and about 40 pills a day of assorted vitamin and mineral supplements a day for a few weeks. After having a very long talk with my GP it was aggreed and cleared with the district nurse that I an give myself by own b12 injections and that it would be provided on prescription when I needed them.

[Cherylclaire Forum Support in reply to Penni]

Wow, Penni, you must have been bad! The nurse obviously couldn't keep up with you. Anyway, good thing you could discuss this AT LENGTH with a GP still willing to listen and treat patient in front of him/her, not the ficticious one that can make their case within 10 minutes and can thrive happily on 3-month injections.

[Penni]

I was very ill, if a friend had notcalled in for a visit the day she did and called 101, there is a very strong chance that I wouldn't be here. At the hospital I was given less than 48 hours too live!! It has been a very long and hard recovery but at least I'm still here too share what has happened too me so that with any luck it won't happen to anyone else.

[Cherylclaire Forum Support in reply to Penni]

....and that's what makes you lovely, Penni !

Glad that the hospital was wrong: I love a happy ending.

Just been to see "I, Daniel Blake" : really wonderful film, but everyone was in tears (so went and had pie and mash to cheer me up!) Also I must be getting better if I can:

a) concentrate on a film from beginning to end

b) stay awake throughout

keep in touch