B12 injections - how long to take effect?

[Oundle]

My neurological symptoms began many, many years ago. I’m hoping to start B12 injections soon. Can somebody who has been in the same situation advise me how long it took to show any benefit.

[fbirder]

It varies. It varies enormously.

Some people report improvements after a few hours. Some people never have a full recovery after many years.

From your other posts you've been having symptoms for over 40 years. That means that some nerve damage may be severe and irreparable.

[Oundle in reply to fbirder]

Thanks

[jointpain]

Like you, symptoms for over 40 years, I have been Self injecting for 30 months now, for the first year every other day, now it is every fourth day, I has helped a fantastic amount when I look back at how I was. Don't expect miracles overnight, but each symptom ticked off is a miracle in its self. I wish you all the best.

[Oundle in reply to jointpain]

From your name here I presume you have, or have had, A lot of pain. Could you tell me what other symptoms you have had, and also, what else has been resolved? I have had many neurological symptoms over the past 40 years. I am pleased your joint pain has been sorted. Thanks

[jointpain in reply to Oundle]

From my name, you are correct. I've had so many symptoms, not all directly attributable to B12 deficiency I think. In my twenties, I was fit as a flea, though very severe knee pains used to come out of the blue causing me to fall. Also gut problems that never really subsided until I became gluten free a couple or three years ago. In my forties had the gut problems many joint pains including hips, back, sacroiliac, and knees. Also I had a very foggy brain and memory, when I turned 60 I had periods where I couldn't walk, had numb areas on my legs, my hands were numb in the mornings I was getting sharp stabbing pains anywhere in my body, felt so tired I wanted to die. Tested for many things, always came back negative. Eventually three years ago saw a programme on TV where a young man was eventually diagnosed with B12 deficiency, many of his symptoms mirrored mine so I asked for a B12 serum blood test though had been taking B12 sublingual tablets and spray for a month or so because of the programme. It came back as @176 which was in limits by 6 so GP was happy. Since then I have hardly seen the GP other than for reasons not to do with B12.

[Oundle in reply to jointpain]

Thanks for your explanatory email. I don’t know if the TV programme you saw was the same one that I saw, based on a GP surgery in the north-east. The GP there was treating his patients with B12. He was a doctor Chandi-or similar, and he was prepared to treat me with B12, but retired before we could get going. Since then I have been trying to get my GP on board, but no luck so far.

[jointpain in reply to Oundle]

I think it was Doctor in the house series 2 episode 3 I may be wrong, but the date stacks up at around mid 2017. You'll be lucky to get a GP to agree to what day it is, they seem to be far to arrogant.

[Oundle in reply to jointpain]

Agreed. Certainly in the case with my GP.

[Sleepybunny]

Hi,

It took many weeks even months for me to see clear benefits but I had been very symptomatic for over 10 years with some minor symptoms before this.

I had multiple neuro symptoms eg tingling, pins and needles, muscle fasciculations, muscle twitches, tinnitus, migraine, restless legs syndrome (RLS) plus others including dementia type symptoms.

In the end I was forced to self treat when all possibility of NHS treatment ended but am still improving several years after treatment started.

My feeling is that many people require far more treatment than NHS allows.

[Oundle in reply to Sleepybunny]

That certainly mirrors my symptoms/condition. My GP won’t accept the fact that I need B12. So I think I must go down that route. I can’t self inject because i’ve lost strength in my hands/arms, and my wife is queasy about doing it. I have contact with a qualified nurse who used to be one of my carers, and she is prepared to come and show my wife what to do.

Thanks

[Sleepybunny in reply to Oundle]

I recently went though all my old correspondence and was shocked at just how hard I'd tried to get B12 treatment from NHS... letter after letter backed up with evidence... a huge folder.

Things were complicated by the fact that despite many typical symptoms, my IFA test result was negative and most of my serum B12 test results were within normal range.

I still feel that self treatment is an absolute last resort but that many forum members have no other option.

In retrospect I wish I'd opted sooner for self treatment.

The stubborn part of me didn't want my GPs at the time to get away with not treating me.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Have you considered joining PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12d.org holds support meetings near Durham, UK

b12d.org/event

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

UK forum members have reported problems getting their B12 jabs during pandemic eg injections have been stopped/delayed/ frequency reduced or swapped for oral tablets.

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Oundle in reply to Sleepybunny]

You are a person after my own heart! We have quite a lot in common! Thanks for sharing that.