B12 Until no further improvement

[Me2801]

My 20 year old daughter has been having alternate day b12 injections since the beginning of November for neuro symptoms. Initially her symptoms: pain, tingling, numbness and tinnitus improved rapidly but over the past week have plateaud and her fatigue, tinnitus although improved are still there with mild tingling. I'm confused by the phrase 'until no further improvement' - is this now and if so how can she further improve symptoms or do we have to convince her GP to continue treatment? Thanks.

[Marz]

Sorry do not have an answer - but a question. Is your daughter also taking Folate with the B12. They work together in the body 😊

[Me2801 in reply to Marz]

Yes she's taking 5mg folic acid

[Marz in reply to Me2801]

I think you should be able to continue with treatment.

Hope things soon improve for your daughter ....

[pvanderaa in reply to Me2801]

Is she also taking a daily multivitamin to provide the other B vitamins that B12 needs to do its job?

[Me2801 in reply to pvanderaa]

Yes but thanks for suggestion.

[clivealive Forum Support]

Hi Me2801 there is no real yardstick to measure improvement as it all depends on the individual and yes, as Marz says Folate is essential to process the B12 your daughter is having injected.

Sadly a lot will depend on how long your daughter has been B12 deficient and how much damage to her nervous system the B12 has to repair.

I wish her well.

[Me2801]

Thanks - she has had symptoms since June but when she first consulted GP he looked at a blood test the year and this was just below range but she wasn't symptomatic.

[Foggyme Administrator]

Hi Me2801. I agree with Marz and clivealive . Your daughter should continue with her B12 injections.

Recovery from neurological symptoms can be slow and a week's 'plateau' is not a sufficient timespan to say that your daughter has reached the point of no further improvement. Some symptoms - for reasons nobody really knows - seem to disappear more quickly than others - and it's different for each individual. We do hear here of people who are still experiencing some recovery following a years' continued treatment. And B12 cannot do any harm. So while there's still potential for further improvement, carry on.

Perhaps the way to deal with this with your doctor is to focus on what is improving and the fact that some symptoms still remain. Your GP may want to - mistakenly - withdraw treatment if you talk of a plateau and no further improvement - and it's far too soon for that.

Does your daughter keep a symptoms log? If so, she may notice that there are, in fact, small improvements that may not be noticed on a daily basis, but are when tracked over time. A symptom log would also provide evidence to show to her GP - evidence to support continued treatment.

Alternate day injections from Novemeber is actually quite a small space of time...many here find that they need alternate day (or more frequent) injections to function - and do so on a permenant basis.

With B12 there are no know 'answers' about length of time for treatment - so keep going while she still has symptoms - especially as it is very early days in terms of treatment length.

There may come a point where you want to re-consider this and try lengthening out the period between injections - with a view to re-introducing more frequent jabs if symptoms return. The problems with this is that the treatment guidelines - even when GP's follow them - are not flexible enough to allow this sort of flexibility (it's alternate days, then every eight weeks - with no room for manoeuvre in between). So...if you opt for a reduction in frequency too soon, your daughter may end up on eight weekly injections, which may not be enough to keep her well and 'repairing'. And it would be a rare GP who would agree to re-introduce every other days jabs once they have been stopped 😖.

Apologies - I seem to have rambled on a lot for one small question. Good luck to you all and please post again if you need anymore advice about this - or help with your GP if he reduces treatment and symptoms return 👍

[Me2801]

Thanks you so much for your lengthy reply and reinforcing what I already thought. She has another further 2 weeks of injections booked in before another meeting with the GP...I just want to be very prepared for the next battle.

[Foggyme Administrator in reply to Me2801]

Good for you - just shout if you need any further support 👍

[jade_s]

Glad to hear your daughter is improving! I've been doing daily injections since end of October. I've also noticed a lot of improvement but have also had periods of plateaus in the meantime. During one of the plateaus I tried skipping a day and some symptoms got worse and others that had disappeared came back. That's when I realized that even if things weren't getting better (temporarily), the B12 was still doing something positive!

I don't know how long qualifies as 'no further improvement' but agree with others that you shouldn't stop the alternate day injections too early.

A symptom log is definitely helpful. I score my major symptoms daily on a scale of 1-10. The last month the speed of improvement has slowed considerably but not stopped. Fatigue and brain fog have been the most stubborn ones.

Also worth getting vit D and iron checked out.

Wishing your daughter continued improvement!