Mislaid information

[Moggie]

Hi All,

Am still busy trying to get my mum the correct treatment for her B12 and have been digesting the information kindly given to me from people on here but I have mislaid a very important piece that I now need as my mum isn't doing so well.

The information came in the form of a link - I think - and even though I have traced back to my previous posts I cant find it.  It was a link that was about the frequency of treatment in B12 deficiency especially if it is neurological.  The specific information I needed to look at was on page 13 and stated that B12 injections needed to be given every 2 days until symptoms ceased and then every two months.  Does anyone know what link I was looking at and if so could they please repost it for me as my mum is only showing signs of progress for up to two days after her injections.  She is having injections twice a week at the moment and when I saw her yesterday (3 days after an injection) she was so unsteady on her feet that she almost fell at least three times.  I want to phone her GP tomorrow to up her frequency of injection and also to get him to extend them until her symptoms are under control, as per the article, as she only has another three left of her original six loading doses but without hard evidence that this is the correct course of action I dont think he is going to play ball. 

I have every faith that someone on here will know what I am talking about and will come up trumps as you guys have been brilliant so far.

Thanks guys

Moggie x

[Sleepybunny]

The "BCSH Cobalamin and Folate Guidelines" have details of treatment on page 8.

Details can also be found in BNF Chapter 9 Section 1.2.

Info based on BNF in this link in Management section.

patient.info/doctor/pernici...

Fbirder has a useful summary of mainly UK B12 documents. if you pm him I'm sure he'll send a link.

May be something useful in this link.

b12deficiency.info/b12-writ...

PAS(Pernicious Anameia Society) are likely to be able to suggest useful info.

pernicious-anaemia-society....

01656 769 717

[Moggie in reply to Sleepybunny]

Thank you so much, I think the patient.info link will be a good and I have also found a NICE link which says the same so, hopefully, I will get my mum the increase in meds that she needs.

Thanks for, once again, coming to my aid - it's much appreciated.

Moggie x

[Jose651]

Sorry M, I can't seem to find an immediate link from replies to your previous posts regarding your Mum. 

However, I spent an enjoyable hour reading your posts on TUK from a few years ago, How  time marches on, and now you have to start learning all over again. 😀

Hope Mum gets a bit better, no doubt she will with you steering the ship.

J

[Moggie in reply to Jose651]

Thanks J - it's a wonder you are not bored to death reading some of my TUK posts/replies.  I used to be admin on the thyroid site and enjoyed sharing my knowledge immensely, but as you say time marches on and I now find myself with yet another challenge on my hands.  I have found a NICE document which may be very helpful and also the patient/info link above, that Sleepybunny has kindly given me, should be enough ammunition to help fight my cause. I think her GP is still on a back foot in regarding to my mum, due to not treating her thyroid condition due to age!!!!!! and he has not refused anything yet so, touch wood, it will continue in that vain and he will agree to adjusting and increasing her loading doses.

Will keep you updated as to what happens.

Thanks for your reply.

Moggie x

[Marz in reply to Moggie]

healthunlocked.com/api/redi...

Above is a link to fbirder's summaries of various bits and pieces.  Have not had time to read it myself .....  Hope it helps x

[Moggie in reply to Marz]

Thanks Marz - hope all is well with you and you have now cleaned up the storm damage. 

Better get on and do some reading them!!!

Moggie x

[Jose651]

I shall wait in full confidence of a positive outcome M.

J

[Moggie in reply to Jose651]

RESULT!!!!!!! - Have just spoken to my mums doctor and, after reading the link that Marz posted of fbirders summary sheet (thank you so much fbirders), I hit the GP with the BMJ's recommendations and the NICE recommendations and he has agreed to continue with my mums twice/three times weekly injections until symptoms cease (she will only get three if the district nurses can do a Saturday) and then every two months after that.

I cant tell you how grateful I am to people on here for sharing their knowledge and giving me the ammunition to be able to fight my mums corner with confidence.

I found a shiny new penny on the floor today and, you know the old saying "see a penny pick it up and all that day you'll have good luck", it certainly seems to be bring me good luck - off to do the lottery now.lol.

Moggie x 

[Jose651 in reply to Moggie]

Class news M for your Mum & you, I never doubted you for a second. 

Hope you get a win.

J

X

[Moggie in reply to Jose651]

Thanks J - throughout all this you have been a constant support and I thank you sincerely for that.  I wasn't as confident as you in my ability to get her the results she deserves - next hurdle is telling my mum that the injections will continue for a few more weeks yet but as she has been noticing quite a big difference in how she is feeling (not forgetting that she is now on thyroid meds and vitd) I doubt she will moan too much.

Moggie x