Treatment Regime For B12 def. with neurological symptoms

[roddogsbody]

I have read quite a few answers on here in respect of the standard treatment of b12 deficiency where there appears to be no neurological involvement. Can anybody point me in the right direction for a treatment regime with moderate or severe neurological symptoms? Grateful for any advice.

Rod

[Foggyme Administrator]

Hi Roddogsbody. The regime for B12 deficiency with neurological symptoms is 6 X 1mg loading doses of B12 (Hydroxocobalamin if you're in the UK) and then 1mg on alternate days until no further improvement, followed by 1mg every 8 weeks.

This information is contained in the British National Formulary (BNF), the doctors prescribing bible, which your GP will have on his / her desk. It's the second item down so the GP will have to read further than they usually do! Many GP's do not know about this regime so you may have to be persuasive.

Your GP may want to check your B12 levels after the first three weeks to ensure that your B12 is not too low. At is stage your B12 levels should be high, because you have been having injections. Your GP should not use a high level as a reason to stop your B12 injections - you'd be surprised how many do! Your GP should treat your symptoms and not,your serum B12 levels. Not many GP's know that 😀.

It's Important that neurological symptoms are treated promptly so as to avoid the potential for permenant irreversible neurological damage.

If you read the pinned PAS posts to the right of the homepage, they'll give you lots of information about B12 deficiency / PA. they also contain a diagnostics / treatment flow chart which will help your GP to diagnose and treat you effectively. The posts also outline what tests your GP should be doing to determine the cause of your B12 deficiency (not much time so can't outline these here). Perhaps others will comment.

Please do posts more questions if you have any problems getting the right treatment (many do) as GP's are woefully ill informed about B12 deficiency and PA.

Good luck and please let us know how you get on.

[roddogsbody in reply to Foggyme]

Very many thanks for that long and thoughtful reply Foggyme. Thanks for taking the time do it. You are so right about woefully misinformed GPs. Mine has ignored all my serious and now rather longstanding neuro symptoms that is why I have been forced down the self treatment path. I am so lucky that my wife is an RGN of 40 plus years experience and is not afraid to jab me daily and is confident to continue with the regime. I even took a polite and respectful begging letter into my surgery, emphasising my neuro symptoms and asking for referral to either a neuro man or an Endocrinologist. 6 weeks gone by now not even an acknowledgement from my surgery. Disgusted does not do justice to what I feel about that! Think I have given them long enough, might be time to consult a solicitor who deals in medical negligence. A letter from them might prompt a bit of action !! Think I might keep updating this post as others might benefit too.

Best

Rod

[Foggyme Administrator in reply to roddogsbody]

Hi Rod. Yes, many GP's are sadly seriously lacking in their care and attention...in many ways, not just the B12 deficient variety. Some of the stories on this site make me want to weep! Or shout in anger!

Your GP should most certainly refer you to a neurologist if you have ongoing neuro symptoms.

I suspect that 'the lost letter' excuse may be trotted out...if it was me I'd appear in front of him / her and ask to be referred to a neurologist...it'll then be up to the GP to explain why this will not be done, of course with medical evidence to support their stance! Or they could always do the right thing and refer you 😀.

I'm now on first name terms with the secretary at my surgery who books these things. When something fails to arrive I simply ring every other day until it does! I heartily wish I never had to know her...and I bet the feeling's mutual!

And yes, please do keep updating...it's always really nice to find out how people are doing and what progress they're making. However, it might be better if you did it through posting new posts (if you know what I mean). Once posts have been here for several days they slip further down and tend to get overlooked as new material pops up 😀.

People can always look at your older posts for historical knowledge...I frequently do this (when time permits) so that I have a better picture if replying to somebody.

I'm really pleased that you're not having to go without your B12 (as a wife myself, I know how very useful we are 😀😱) but think your idea of seeing a neurologist is a good one, since there may be our causes for neurological symptoms and it would be very reassuring to have these ruled out.

Anyway, I wish you luck with your sloth of a GP and look forward to seeing your updates 👍.

[Gambit62 Administrator]

These are guidelines for UK

bcshguidelines.com/document...

see p 8 - around the bottom.

Different guidelines apply in different countries so you may not be able to use these as a definitive document, particularly if you are in a country that uses cyanocobalamin for treatment.

[wongy215]

I have just had 5 loading doses and gp doesn't want to give me any more , says will see me for blood tests in 3 mths and decide from there.I've taken into my own hands and ordered online and will self inject.I feel miles better after each jab but after a few days can feel legs becoming stiff and heavy again and I'm not going back there.good luck with your gp mine are useless

[roddogsbody in reply to wongy215]

Many thanks I have gone down the self injecting road too. I have only seen one neuro regime though and that was a USA medical site. Stated one Jab per day for 7 days followed by one jab every other day for 7 daysafter which it switches to a jab every 3rd day for 3 months. It then switches again to monthly or even once a fortnight. The advice on this site was to keep to a potassium rich diet while on this regime as it can deplete potassium which is important for heart function. So plenty of bananas, avocado, certain types of melon just google that. Also make sure you have plenty of folic acid as b12 works best with folic acid. I did see another site somewhere which recommended a daily jab until no further improvement, before switching to a monthly or even every fortnight regime. Can't seem to find that site now though. I posed the question to see what knowledge others might have found out. I stress though that both these regimes are for neuro symptoms which seem to be a bit of a progression from the physical. I was getting paranoia and all sorts of nasties.

Cheers

Rod

[Holnee in reply to roddogsbody]

Hi, Could you please provide the reference for these guidelines? I live in the US and would like to discuss the US guidelines with my doctor.

[roddogsbody in reply to Holnee]

Hi I will check with my wife but I think it was on a site called medicine net. If we find it again I will post the link to you.

Best

Rod

[wongy215]

Mine was mainly heavy legs that I couldn't bend fully which made walking downstairs, getting out of Bath etc very painful,but also muscle spasm, twithing, exhaustion, and very worrying urgency and slight incontinence .Dr Chandy at b12d spoke to me over phone and advised me to accept what gp gives and smile sweetly, and inject every other day until symptoms are gone then extend period between, he says most people need monthly and it's ignorance on gps part .

[fbirder in reply to wongy215]

Dr Chandy at b12d spoke to me over phone and advised me to accept what gp gives and smile sweetly, and inject every other day until symptoms are gone

Are you sure it was until symptoms are gone? Because that would result in a lot of people injecting every 2 days for the rest of their lives.

Firstly, some symptoms (especially those due to nerve damage) will take a long time to repair - and possibly will never go completely.

Secondly, some symptoms may not be because of a B12 deficiency. My neuropathy started about the same time as I was diagnosed with PA. And it continued to get worse, and worse, despite injecting weekly. My neurologist says it's almost certainly due to something else.

The normal recommendation is to have frequent doses until there's no further improvement in the symptoms.

[wongy215]

Yes you're right, no further improvement. Wishful thinking on my part that they will altogether. 😉