I read tonight in the BMJ article by Hunt et al that it takes between 6 weeks and 3 months to heal neurological damage. Does anyone know of any other articles/sources that quote actual time scales for healing neurological damage?
I think these could be really useful for presenting to my doc. I am trying to get more injections than the standard 3 weeks of shot loading then falling back to bi-monthly injections. I fear these could be inadequate. If I could at least get increased injections - even one a month, say - during a prescribed average healing time - that might help me out.
Anyone got any ideas for further reading or things I can quote to him?
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Chancery
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Hi Chancery, Would you please post title of BMJ article and year and volume if you have them? Most journal articles waffle around when it comes to projecting actual periods of time.
The version used in the netherland implies it can take up to 2 years, but 've read research articles that imply the window of repair is only 3 months etc so there does not seem to be a definite answer. As Hillwoman mentions its most probably dependent on the person, how long they hyave been def, what damage is already there etc, and why etc.
I remember some one once asking how long it takes to die of PA, that was the same sort of question...no real answer possible..
Yeah, this is what gets me. I argued him black and blue today. I gave him a copy of the Haematological Society's Guidelines, which I'd given him before. He was sitting with them on his lap, right in front of him, and they say really clearly that if you have neurological symptoms you give 1mg IM until there "is no further improvement." But we're not AT that place and yet he keeps saying "there's no rational need for more B12". He also said that I was arguing for alternate day B12 shots for the rest of my life. I told him I wasn't, just for the 6 weeks to 3 months - but he wasn't having that either.
I have a horrible conviction that if I had PA and was walking with sticks he'd have no problem giving me indefinite B12 injections (take note anyone in Edinburgh, if you want his name!), but because this isn't a standard B12 problem he couldn't stomach it. Right now I wonder why the hell he bothered to give me them in the first place.
Ah Najii, tempted as I am, I fear I wouldn't get another doctor to give me them AT ALL - not for trigeminal neuralgia - so I shall have to make do with the material I have!
Chancery dear, if there's no doc you can work with, then what's stopping you from ordering your own shots online???
To get over the initial iccky part, you'll have to watch a few YouTube tutorials while practicing your jabbing technique on an orange (or your spouse lol) until you have the routine down cold. You should be good to go in no time!
Convenience aside, your doc seems to feel he has all the time in the world while YOUR spinal cord is turning to mush!
Don't wait. Neurological symptoms require aggressive treatment before it's too late: fe.gd/VJe
I know, Najii, I should be brave, but I'm not. At the moment I'm waiting to see what my B12 will be like when we retest it on the 22nd of December. After that, I'm going back to sublingual drops. They seemed to help me, so I'm hopeful that they will be sufficient between maintenance shots. And you are absolutely right about my doc; he's taking care of his medical 'scruples' at my expense. I could see this argument if it was reversed and I was on regular B12, begging for anti-convulsants, which are far more dangerous, but I'm not. It's a f***ed up world.
Haha! You're right about that one! Most docs would sooner give patients prescriptions for heavy duty, addicting narcotic pain killers like OxyContin than for a simple thyroid med or B12 .
Oh absolutely, Hillwoman - couldn't agree more. Trouble is, my doctor won't accept that. You might as well tell him angels had told you that. I'm looking for something concrete from an authority. If it's not in black and white he isn't listening!
Hi Leilanilea, it's called, rather boringly, "Vitamin B12 Deficiency" and it was written by "Alesia Hunt, haematology specialist registrar, Dominic Harrington, consultant clinical scientist, and scientific director of Viapath LLP, Susan Robinson, haematology consultant", published 4th September 2014.
It took me ages to actually access it. I had to put the authors names into Google along with BMJ then go through all the BMJ articles it brought up till I found the PDF. It generally brings up lots of the responses and the little synopsis things they do (forget the name of the damn things!), but if you persevere you will find it. Otherwise you will have to sign up for a free subscription.
Here is the relevant bit: "Neurological recovery may take some time; improvement begins within one week and complete resolution usually occurs between
six weeks and three months. Progression should prompt reassessment of the diagnosis. Patients with delayed improvement should be referred for rehabilitation, including physiotherapy. Residual disability is seen in up to 6% of patients.
Damage is likely to be irreversible if diagnosis and treatment
are delayed by six months."
This is the only mention I have ever been able to find. I should just say I used it on my doctor this morning, while trying to get more injections and he was completely underwhelmed, so it won't necessarily win any arguments for you. He just quoted the usual "your blood is now full of B12, you don't need any more" argument. So it was a total fail for me. Good luck.
Going a bit off topic here, but your doctor sounds like one of the increasing number whose training teaches them to see the human body in purely mechanistic terms, i.e. one size fits all, since we all respond to treatment in precisely the same way; if we don't, then the patient's symptoms are caused by another condition. At which point I think the medic concerned is no longer a doctor but a technician. She/he is likely to see contrary evidence as none of their (or your business) until NHS guidelines change.
If your doctor is the more old-fashioned authoritarian type, then you are making an unspeakably impertinent challenge to their position!
Oh, if only that was his only failing. I think what is REALLY happening here is he actually WANTS to be the great doctor saving everyone, so when he lectures me about not wanting to "collude" with patients, what he really fears is that HE has an impulse to "collude" with patients, i.e. save them from horrible diseases with his brilliance and be loved as The Great Man. Subsequently he won't allow anything away from the norm because he doesn't trust himself.
At the end of the day this means I'm being 'punished' because he fears he might get embroiled in a "relationship" (he actually used that word) where we are all dancing round the fire and praying to Gaia.
I REALLY wanted to say to him 'All I want is for you to give me what I want. I don't give a damn about you or your thoughts and feelings.' But we only think these things and do not say them. That is if we want to get any B12 at all.
No, he's not the authoritarian type. He is definitely more of the new school, everything done by the book otherwise you are "going to the dark side". Trouble is, it seems to bring out an irrationality that defies belief and, paradoxically, contradicts the very rationality he claims to so worship. Damn.
But you are absolutely right. Technician is a very good word - and suits him. I think he'd pride himself on that. I made the mistake the other day - and knew I was making it; told him so, even as I was doing it- of telling him I'd got a subconscious insight into my condition in the shower, while 'zoned out'. I would never normally mention this to him, but I'd been cornered and couldn't think fast enough on my feet (I should have just lied). Honest to God, the man nearly died. He actually doesn't believe that the human brain can sometimes get insights into the human body. It just drives the bloody thing but apparently it can't understand its own processes. This division of mind and body is what has made mental illness such a stigmatised thing. The fact that medical professionals 'disapprove' of any talk of the brain as a contributing factor to illness (and health) is unfathomable. And now I am REALLY off-topic!
Well, it was your question we were considering, so you're allowed to be off-topic!
You're right - so many doctors seem to view the development of a genuinely therapeutic relationship with a patient as a threat, perhaps because it may lead them to question their beliefs and their training. Collusion does exist, of course, but using the term in a private medical context where a patient is seeking an adult discussion about effective treatment for a physical disorder is inappropriate.
Doctors tend to be very conventional people to start with, and then they have to negotiate a rigid professional hierarchy, relying on patronage ('mentoring') as they go. The main objective of any establishment profession is to perpetuate itself, so if one individual steps out of line, they're in the wilderness. ( I've seen this happen to a few brave doctors I've come across, one at fairly close quarters.) The fact that many patients are left without effective help for treatable conditions because everyone's toeing the party line does not seem to be a concern; patients are at the bottom of the hierarchy, after all.
Yes, I agree absolutely that some of the best insights occur when you've zoned out a little, or on the edge of sleep. Being able to solve complex problems during sleep is a recognised phenomenon too.
Excuse me if I'm rambling, I'm drinking a measure of spirits to sooth a sore throat!
Yes, being left in the wilderness must be a really tangible fear for them. When you consider they can be ten years in training, and all of that at the hands of a handful of frankly ancient medical schools, then they have to negotiate the NHS, a hierarchy to die for, it's a miracle any of them are capable of original thought. It's a bit like being institutionalised - you know the way men get in prison; where they are so used to regimens of going to bed, going to the yard, having their meals by the clock, that some of them reoffend when they finally get out just to get back in.
Doctors, poor sods, they are all 1984-style prisoners of the thought police!
This morning I had a sudden realisation how absurd it was that he'd given me a specially long lecture on placebos and how my Trigeminal Neuralgia wasn't even certain; it might be a dental problem - all this as his counter-argument for why I shouldn't have extra B12 shots, yet this was the man who had gone into scepticism overdrive at the notion of my subconscious coming up with something useful. With no sense of irony, he had sneered at my subconscious insights and then jumped into an argument for how almighty the placebo effect was. So, apparently, the subconscious belief in placebos is so strong doctors believe it can kill searing pain but a subconscious revelation lacks rigour and deserves only contempt. You just can't win against an argument like that...
Chancery, me again. I tried a trick I've used in the past, and Googled "Neurological recovery may take some time; improvement begins, Hunt, B12" and it took me directly to the pdf! I used your info to get there -- thanks again. Leilani
Thanks, Poppet. I don't know if God was on my side or what but I managed to find the entire article on a PDF. I was as thrilled as if I'd won a prize. Unfortunately, although I took it in with me, and highlighted the bits about neurological healing taking 6 weeks to 3 months, my doc wasn't having it: Plenty in the blood, "not rational" to ask for more, it was probably a placebo effect. Yada, yada, yada... He actually went so far as to say that my illness, trigeminal neuralgia, might not even be real. We didn't have any proof of anything therefore we couldn't treat anything, as that was "going over to the dark side". I came out pretty much feeling that he'd never believed in anything I'd said and he had reneged on his deal to treat me aggressively. I think it was that that hurt the most.
I used quite a few of the arguments you gave - thanks for those; I find them useful takes on the subject - particularly it being metabolic and not a blood problem, but still no joy. It was like he'd been nobbled. But I suspect the nobbling has come from himself, i.e. he's thought better of what he's doing, or other doctors have been teasing him in the break room. Christ knows, I don't, but the terror has obviously struck. He might dream of being the big medical discoverer but he obviously doesn't have the cojones for it.
Anyway, I 'agreed' to accept testing the blood again in four weeks and IF - that's a big if, I fear - my B12 level is low, and I'm obviously not holding it, then he'll think about giving me more frequent injections than bi-monthly. It was crap but the best I could get. He's dug his heels in now and won't be shifted.
Get him to put the article in your file. He is obliged to bring his skills and knowledge up to date and his argument is in direct contravention of the article. He can't possibly have read it.
If you've got the link to the pdf feel free to post it on here - it might help a lot of people.
Yep, that's the one. I just saved it to my computer and printed it out - I no longer have the link. I think I was so bloody excited I didn't think to keep it. Sort of like Gollum with the ring. Sorry everyone!
Well, the article itself isn't comprehensive - at least not relating to treatment - but I think the research team are well aware that the treatment guidance is 'lacking,' which is why they have put up two reasonable 'disclaimers' - one in the article and one in the response section.
Finding out if the treatment was effective wasn't in their remit so I'm sure, everything else included, they can be forgiven.
The main point really is in the abstract. The abstract tells doctors (if they can be, a) bothered to read it, and, b) understand it if they do read it) that b12 deficiency is a metabolic disorder affecting the nervous system and that it 'may' affect the blood.
But I think, going by the comments section in the CME, that a lot of them don't get the biochemistry. Or, they do get it but they just can't absorb the fact that they have been getting it wrong...
The article repeats a lot of the Haematological Society Guidelines - I suspect one of them either wrote or helped write them. But it was most useful in giving ACTUAL timescales for improvement. Although thousands of PA sufferers must have been treated for neurological damage - many thousands in fact - there are precious little guidelines about. In fact, for such a common disease there is a singular lack of collated information on ANYTHING. No-one can even seem to agree on basics like injection frequency, or type of cobalamin, or test criteria. I have no idea why. It's kind of left the whole 'disease' to run around like a headless chicken and goes a long way to explaining why B12 deficiency, as a separate entity, just isn't on doctors radars at all. The poor sods don't even have a directive for the 'standard' complaint never mind the 'fancy' stuff.
Problem is that the haematological society guidelines aren't based on any actual research. In fact they aren't based on anything neurological - they are based on haematological healing.
The society were the ones that up to very recently - their previous guidelines were out in 1990, were recommending 50mcg tablets per day.
Which is probably why I was prescribed a 50mcg tablet per day.
We have this whole problem where the haematologists are left to diagnose and treat a neurological condition that cannot be appropriately identified through the blood (not at least with the current levels) and it certainly cannot be identified how much neurological damage has been caused through the blood and neither can it be identified that a patient has had neurological damage treated throught the blood.
What has happened is not that thousands of patients with neurological damage have been treated but thousands of patients with early stage b12 deficiency have been treated - and that is before their are signs or the signs are only minor, of neurological damage.
It's like I said before, b12 deficiency causes one of the reversible dementias - when has anyone ever had it reversed by being given b12?
The reason they are running about like headless chickens is because they are trying to treat a neuro condition as if it is a blood condition.
I know what you're saying, Poppet. In general, in the short time I've been researching B12, I've been very struck by the absence of rigorous guidelines and the absence of anything very consistent at all. It all seems rather slapdash and out of date. I can't help feeling that the 'scandal' they had in America, when doctors were giving B12 shots willy-nilly just as a pep-you-up, impacted badly here too, and there still seems to be a terror of being thought 'alternative' if you diagnose or give B12 unless someone has PA and is walking with sticks. I reckon it's a rebound reaction. Pretty crap for the sufferers though...
I have been self-injecting large doses of methylcobalamin for 2 months and am beginning to feel improvements. I nearly gave up, but glad that I didn't. The problem is numb,burning feet which my doctor said was not a neurological symptom. I certainly had the symptom for over a year, but didn't go to doctor till I was very exhausted, dizzy breathless and confused. I was advised to go home and eat large quantities of leafy green vegetables. At this point my blood was normal in every respect except B12 which showed up as "border-line" . All other results were shown as scientific values, but not B12 I found out later that the value was 140 thingies. Why was that kept from me ? It is so weird how PA is treated.I had to go privately to find out that I had the antibodies to the intrinsic factor,and therefore PA. I began to feel there was some sort of conspiracy! I have also resorted to finding out info. from the internet, for which I am berated by my GP! But I'm on my way to recovery in a large measure due to the marvellous people on this site! Thank-you all esp. Poppett11 and Marre. Bless you all!!!!
Lovely to read! Its so nice to read positive results! I am only giving back what was given to me 6 years ago, I'm still so grateful to several persons that helped me get the confidence to seek the treatment that works for me.
Hi Wedgwood, interesting to see you're using Methyl. I am going to self-medicate - probably not with injections as I am too afraid; I'm going sublingual, I imagine - but I want to try Methyl as it is supposed to be better than others for neurological damage. Have you tried the other types of B12 and found this one to be better?
Yes, Chancery,initially for 6 months I injected hydroxocobalamin. It helped the other symptoms but not the numb burning feet . For the past 6 weeks I have injected mega doses of Methyl,and I have eperienced a marked improvement in the numbness, but not the burning,I had read in Martyn Hoopers' books that methyl helped neurological symptoms. I had tried Methyl sub- lingual lozenges,but they didn't help. As methyl is one step nearer to absorbtion than Hydroxo this maybe the reason that it is working for me.You may well be able to absorb Methyl sublingually. It is certainly worth a try. The very best of luck.
That's good to know, thanks. I have some cyanocobalamin drops to use up first, but once they are done I am going to seek out a Methyl version and try those.
Firstly, I had to go to an Ecological doctor to prescribe Methyl from a compounding chemist in the USA. This took ages and was very very expensive and complicated. Now I find you can obtain it from Oxford Biosciences, but it is dried(to get around NHS reulations I suppose as Methyl is not licensed here) Then you need to get saline from Blofeld apotheke in Germany to make it up. But you can obtain ready made-up ampoules from the Arnika Apotheke in Munich( it is a good reliable source--I remember it from when I used to live in Munich.) You can get
10x 1mg ampoules for 28.509 Euros or 10x 5mg ampoules for 39.80 Euros
Plus 15 Euros for P&P You can pay with credit card or Paypal.
Thank you, Wedgwood, but I seriously doubt I'd have the cojones to inject myself! It will be sublingual or nothing for me. Believe it or not, my doctor has taken to hiding injections from me so that I can't do it myself. I think he suspects I'm going to treat myself!
Thanks, Marre, that's really interesting. Especially interesting to see how many different treatment protocols they were using - like 1mg injected twice a day! If only... But I was really surprised to see this was from 1954, so they've known for a long time that B12 maybe plays a role in TN. It makes you wonder why the hell no-one has pursued this with proper research. Wish I could see the whole paper. You know, maybe medical research would do better if they didn't keep all their research locked up and charge outrageous sums every time someone interested wanted to read the damn things...
I know, would be nice to read all. Perhaps in the fifties it was new, B12 and what it did, and I suppose as you say in your next post, there is not a lot of money in producing B12..
Yep. I noticed how many were from Germany. They were obviously researching it there at the time, and it's never been discredited; they still research it half-heartedly now, so I'm guessing that anti-convulsants were either discovered in the 60s, or their use for TN was discovered, and the drug companies had no further use for B12 research: no money there, lots of money in anti-convulsants, which TN sufferers have to be on for life. What a terrible shame.
That link works in my email but not from here! But lots of articles from the fifties. What the hell happened? It wasn't discredited, I don't think, because you still see B12 TN studies now, and I've never read anything against the practice, so why was it all the rage in the fifties and then... just nothing? Possibly because they realised that anti-convulsants worked. But it does make you wonder, at the risk of being a conspiracy theorist, if the drug companies realised they could get rich off expensive anti-convulsants but not cheap B12.
Thanks, Najii. I haven't yet spotted anything about timescales, but that is an incredibly interesting document. It has some great stuff about cure rates, and some REALLY interesting stuff about he likelihood of cures in different age groups etc. Also a great piece about how people with 'normal' blood results are actually MORE likely to have neurological problems. You should just post this up as a general link for everyone - it's great stuff. Thanks again.
Another interesting one, thank you. Particularly liked the pictures on that one, showing the improvement in the spinal cord. That and the fact that the patient wasn't showing any particular blood problems, nor anything else particularly indicative of neurological symptoms, just tingling, and yet look at the state of the poor man's spine! And yet doctors still argue blind for the blood tests as an absolute result. Go figure...
Hell, Najii, no, I'm not sure. Not at all. I'm sure of nothing. That's the fun of Trigeminal Neuralgia! But I did discuss the possibility of that with my dentist and she didn't seem to think it was likely. I took in my night splint and showed her the wear on it (a big hole over the 'sensitive' area) and told her my mouth clicks badly when I yawn, but she thought that was all normal. With previous dentists I've discussed my teeth no longer meeting properly at one side; the tooth grinding, the sensitivity....
Hell, I've thrown everything at them, but there were no takers. So until something better comes up, I'm stuck with TN.
Golly-seems I hit a raw nerve there! I had my own bout with TMJ years ago. It felt like the flesh was being ripped right off my scalp, jaw and shoulders. What agony! Fortunately it ended as abruptly as it began. Took about a year.
Hah! A raw nerve indeed, you merry punster. No, I think one of the troubles here is that doctors and dentists live in separate worlds; there is no holistic crossover. My doctor actually said to me, when discussing my difficulties with a certain diagnosis, "I know nothing about teeth. My knowledge stops at the jaw." When you think about it, that is REALLY wrong.
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I had my own bout with TMJ years ago. It felt like the flesh was being ripped right off my scalp, jaw and shoulders. What agony! Fortunately it ended as abruptly as it began. Took about a year. 
How long before B12 starts repairing damage? 
Has anyone used or heard of Infared Light to heal, PA nerve damage
Pernicious Anaemia
Not to give folate until B12d is cured - It makes neurological symptoms worse!
The Times today
