What dosing do I ask for when loading stops?

[Chancery]

Hi, I've just started getting loading shots from my doctor. These were hard-won, for Trigeminal Neuralgia, a neurological complaint, which I managed to convince him might be B12 deficiency related. The Haematological Society recommends that you keep doing loading "until there is no further improvement" but with TN I'm not sure it's going to be feasible to do that. It's considered an incurable disease and I am fortunate to be getting this treatment - if the stories on here are anything to go by! - so I doubt if we will see measurable results that quickly.

The society recommends continuing loading shots for three weeks, if you are not sure what else to do, and then going onto bi-monthly shots, but I'm worried about stopping them too soon to see a difference and I can't see bi-monthly shots making much impression on such serious damage as TN.

My question is, after the loading period what should I bargain for? I think I can argue my case, because the doctor wants to believe in this treatment, but what would be appropriate for neurological damage? I thought perhaps once a week, if he would agree to it. Failing that, once a month. Anybody who has had neurological damage (I'm not expecting you to have had Trigeminal Neuralgia - it's rare - but any neurological damage would do) got suggestions as to what might be a good therapeutic dose to stick to? And how long I should be on it?

Any insights most gratefully received...

[Poppet11]

You're going to be in the same position as the rest of us who have neuro pain or damage due to b12 deficiency - unless you have doctors who believe you if you say the b12 improves your condition.

Your condition seems to join a long line of other neurological conditions of unknown cause which are, funnily enough, a result of demyelination.

Many people with symptoms such as yours are diagnosed with b12 deficiency but still can't get enough treatment to permanently keep the symptoms at bay.

The guidelines that say keep going until no further improvement are rarely done - most b12 deficient patients get 5 or 6 loading doses and then get shifted on to 3 monthly. It doesn't matter whether the symptoms come back or not.

Welcome to the wonderful world of B12 deficiency where everyone thinks it's a blood condition and they treat the blood!

What it actually is, is a lifelong, life-threatening, demyelinating neurological disorder and we are the only bunch of patients who are left to sort it out ourselves.

In short Chancery - most of the people on this board have got neurological damage - we just get told that our blood levels are normal now and to go home.

Get your loading doses and see if it helps. See when your symptoms return, go back to the doctor and hopefully you won't get laughed at like most of us do. What is more likely to happen is that your doctor will read your blood test results, tell you your serum b12 levels are fine (or too high - they like that one) and you will start having to beg.

If you can get them weekly (and you have a 'neurologic diagnosed' illness, so you might be in with a chance) then take any offered.

If will be interested to see if your condition does improve - because if it improves then it is most likely that b12 deficiency was the cause of it in the first place.

[Chancery in reply to Poppet11]

Hi Poppet, yeah, it's tricky. My situation is complicated by the fact that I am on permanent anti-convulsants and can't come off them to see whether things improve or not. Well, technically, I could, but as I'd be unable to function and would last about two days without them, the point is moot. For me, the B12 is treating my residual mouth pain, which is what I'm left with when the 'electric shock' pain is dulled by the anti-convulsants. Subsequently I can only really judge on that. I have decided to take the bull by the horns and come off one of the two anti-convulsants I take. As a matter of course, both removing the drug and the ACT of removing a drug, both increase mouth pain, as well as produce a host of nasty withdrawal symptoms. This will create such a chemical shit-storm the B12 will be doing REALLY well if it helps me manage the mouth pain through it. But I figure I need to do something drastic to get an idea of what's working and what isn't. It will also make me clearer-headed so that I can deal with what is or isn't responding. Or I'll make things worse........ Damn! Still, gotta do what I gotta do.

I read another post of yours the other day, talking about your B12 life story, and I see you lived on Orkney. I lived there for 7 years. Where were you based?

[engels]

Can you get whoever is doing your injections to show you how? Then you would be ready to treat yourself if you think the B12 is helping but you can't agree with your doctor on injection frequency. Failing that, say that your arm is sore and ask for an injection in your thigh instead so you can see where it is safe to insert the needle.

[Chancery in reply to engels]

Yes, Engels, if push comes to shove I have that as a strategy. But is there a safe and unsafe place to inject into a muscle? I didn't realise that. I thought you just went for a major muscle area and off you went......? I'm embarrassed now. So what's safe and unsafe?

[engels in reply to Chancery]

This is a pretty good guide: cmft.nhs.uk/directorates/me...

I find the easiest place to inject is in the thigh. It's much easier to see exactly where you're sticking the needle than arm or bum.

[Chancery in reply to engels]

That's a good, informative leaflet, if a bit scary, thanks! I had my second injection today, given by a different doctor, and it hurt like hell. The first one, by my regular doctor, didn't hurt at all. What the hell happened?! Just going to put a post up asking for some advice on how to get pain-free injections - if that's possible to obtain consistently!