What can you do if no-one knows what's wrong with you?
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Everyone is different.
Maybe this is because b12 interacts with other b vitamins and/or they have another deficiency that needs rectifying.
The whole thing can get even more complicated - especially when you consider that any vitamin supplements you might take are not actually vitamins - they are chemical substitutes.
In my case I took 2,000mcgs and I knew within 2 hours that there was improvement in both my blurred vision and clarity of thought. I then took another 1,000mcgs.
Some people seem to be have to take it for weeks to see any improvement in anything.
What I would say is that if you take it for 3 weeks or so and don't feel any improvement, then also attempt to get your folate levels and ferritin checked. You'll have another fight on your hands there, particuarly getting the ferritin.
When you get it, just take as recommended and then go with the flow. It's one heck of a learning curve.
Maybe this is because b12 interacts with other b vitamins and/or they have another deficiency that needs rectifying.
The whole thing can get even more complicated - especially when you consider that any vitamin supplements you might take are not actually vitamins - they are chemical substitutes.
In my case I took 2,000mcgs and I knew within 2 hours that there was improvement in both my blurred vision and clarity of thought. I then took another 1,000mcgs.
Some people seem to be have to take it for weeks to see any improvement in anything.
What I would say is that if you take it for 3 weeks or so and don't feel any improvement, then also attempt to get your folate levels and ferritin checked. You'll have another fight on your hands there, particuarly getting the ferritin.
When you get it, just take as recommended and then go with the flow. It's one heck of a learning curve.
Airfairy has already responded so you have got some answers to your questions.
Fair enough, didn't see that when I read over it quickly.
I'll say again, medical students aren't taught that this is a demyelinating illness - they aren't taught it's serious - and they are taught that the b12 levels are the be all and end all. Like you have clearly indicated.
Any low b12 is of significance.
Any b12 into the grey area is of significance.
Any low b12 is of significance.
Any b12 into the grey area is of significance.
Fair enough, I don't know the specifics of the B12 test - I was aware that it wasn't a brilliant test as I had a discussion about this with patient who brought in an article from, I think the times (? maybe you remember it, from last year sometime) and did some research at the time.
Seriously though, every medical student worth their salt knows to trot off the causes of a peripheral neuropathy to include B12 insufficiency, and subacute combined degneration (i.e. the CNS demyelination) was also an answer to a question in our path exam where we were shown a picture of an atrophied stomach (pernicious anaemia) with a megaloblastic anaemia on the patients full blood count. I must admit that I did (ironically) forget the name for this and put 'central demyelinating disease' or some rubbish like that, probably didn't get the mark but will remember it now.
It's absolutely classic exam fodder though - neurologists drum it in to you at bedside teaching, and every neurological OSCE (clinical exam) you have you can ram B12 in as a differential diagnosis if you're stuck because of its upper and lower motor neuron signs.
Which brings me back to you being wrong about it being the same as MS - it has similar central demyelination, giving similar symptoms/signs but with a completely different spatial and temporal pattern. AND every neurologist drums in to you the common metabolic causes of neuropathy - B12 and diabetes - and MS doesn't cause any peripheral neuropathy or associated symptoms.
You have an odd understanding, perhaps, of how medical students learn (i.e. not from lectures, but from reading textbooks and random on the go teaching) and every textbook that talks about low B12 talks about subacute combined degeneration.
I believe the other symptoms include those of anaemia (i.e. tiredness etc. but not necessarily with an anaemia), some psychiatric symptoms, and other nonspecific malaise.
You seem very well informed though, so please let me know if I've got anything wrong in the above.
I don't have an odd understanding - I've seen the medical training video. It's 15 minutes long and it's a cartoon and it includes symptoms such as fatigue, sore tongue and anaemia.
If you look, even you mention it - the anaemia. The word drives me crazy.
You don't need the anaemia. You don't need b12 to be subnormal. The ranges are wrong. The interpretation is wrong. We are, all of us, relying on that one inaccurate blood test to give a patient a diagnosis.
Murphy and Minot incorporated patients into their study with anaemia because they wanted to see how the treatment affected bloods. They had no other way of confirming a diagnosis and even then they knew from Russell's studies that the blood abnormalities did not need to be present to confirm it.
They proved they were treated quickly.
They also proved the neuro damage.
These days doctors treat the bloods and look to some other cause for the neuro damage.
Medical students are not taught to tie symptoms of subacute to b12 deficiency. What they are taught it that once serum b12 is into the normal range, then the physical symptoms cannot be that of b12 deficiency because it is treated. But it can be treated within days simply by altering the diet.
You said it yourself - what were the ranges? What conclusion were going to deduce once you discovered that range was into normal? Would you continue to refer the patient on for symptoms caused when the b12 level was subnormal or would you think the b12 level was okay and therefore look for some other cause - or worse, decide the patient was in someway being emotionally hysterical and undermine their trust by referring them for cognitive therapy when in fact they have a very serious, lethal illness.
From my own experience and medical records and consultations outside of my personal experience (a quick head-count) 7 doctors discounted it when it was low. Four doctors discounted remaining symptoms when it was uncovered. Two neurologists said remaining symptoms couldn't be due to damage when it was low because b12 was normal now. Two consultants discounted b12 once it came into normal range - one, I have a beautiful letter from stating that because there was no severe anaemia I wasn't really ill.
One haematologist who did know about it, said it needed treating aggressively in it's own right and after treatment commences range should go above 2000. but then he is one of the countries top haemos and writes for the WHO.
So, please explain to me, why at least the 2 neurologists who I have communicated with would not look at deep sensory damage in respect of a recorded b12 deficiency because 'serum levels were now into normal."
And when it comes to MS and peripheral neuropathy - lets look at it another way (or two) Not every b12 patient gets peripheral neuropathy.
And when was the last time you heard of any patient with low b12 and any neurological symptoms getting every other day injects until symptoms stop improving?
You won't. Because a couple of days after treatment commences the serum levels return to normal and the treatment is withdrawn.
And you show me any MS patient who has had aggressive b12 treatment at the commencement of their illness.
Although I can show you a few that have had their b12 levels tested after MS was diagnosed and then they were offered an injection every 3 months.
I can also show you one MS patient who several years later had their diagnosed revised to b12 deficiency.
So the situation you have is this.
The patient goes to the doctor complaining of ... fatigue, blurred vision.
Doctor does a b12 (which is rare in itself) and the level is 201 (1 out of normal range)
What happens to that patient?
a) they are sent home and told to exercise more and take relaxation classes
b) they are referred on for further investigation.
On referral the b12 levels are checked again. This time they are 205. Still normal - can't be the b12.
The patient is given numerous scans, tests and exams. They are given a cocktail of drugs. What they aren't given is b12.
Let's take another scenario;
Patient goes to doctor complaining of fatigue and general overall weakness.
Doctor tests for b12. Comes back at 120.
GP asks about diet. Patient is not a vegetarian.
Patient told to eat more meat.
Patient gets worse. Vision deteriorates. Slight hair loss. Mood swings. But patient has increased meat.
Doctor now pronounces patient is a 'worrier' is 'stressed' cannot 'cope.
One year on b12 is checked again (they check annually) And b12 has gone up. Still deficient. Doc prescribes low dose tabs. b12 goes into normal range. Patient improves but is still complaining of lasting symptoms.
Patient referred to specialist.
B12 due to tabs is into normal range. What can be causing symptoms? Maybe MS?
That patient never, ever got aggressive treatment for b12 deficiency before medics start looking for the 'cause.'
As I say, I don't have an odd understanding, I have letters after my name so you've no need to be concerned about that.
What I would like you to do, is watch the film. Because it is clear you have not.
If you value education more than intelligence (and believe me they are not the same thing) then you better make sure that education is a good one.
Everybody who has watched the film knows that doctors in it clearly state that training in b12 deficiency is lacking.
If you look, even you mention it - the anaemia. The word drives me crazy.
You don't need the anaemia. You don't need b12 to be subnormal. The ranges are wrong. The interpretation is wrong. We are, all of us, relying on that one inaccurate blood test to give a patient a diagnosis.
Murphy and Minot incorporated patients into their study with anaemia because they wanted to see how the treatment affected bloods. They had no other way of confirming a diagnosis and even then they knew from Russell's studies that the blood abnormalities did not need to be present to confirm it.
They proved they were treated quickly.
They also proved the neuro damage.
These days doctors treat the bloods and look to some other cause for the neuro damage.
Medical students are not taught to tie symptoms of subacute to b12 deficiency. What they are taught it that once serum b12 is into the normal range, then the physical symptoms cannot be that of b12 deficiency because it is treated. But it can be treated within days simply by altering the diet.
You said it yourself - what were the ranges? What conclusion were going to deduce once you discovered that range was into normal? Would you continue to refer the patient on for symptoms caused when the b12 level was subnormal or would you think the b12 level was okay and therefore look for some other cause - or worse, decide the patient was in someway being emotionally hysterical and undermine their trust by referring them for cognitive therapy when in fact they have a very serious, lethal illness.
From my own experience and medical records and consultations outside of my personal experience (a quick head-count) 7 doctors discounted it when it was low. Four doctors discounted remaining symptoms when it was uncovered. Two neurologists said remaining symptoms couldn't be due to damage when it was low because b12 was normal now. Two consultants discounted b12 once it came into normal range - one, I have a beautiful letter from stating that because there was no severe anaemia I wasn't really ill.
One haematologist who did know about it, said it needed treating aggressively in it's own right and after treatment commences range should go above 2000. but then he is one of the countries top haemos and writes for the WHO.
So, please explain to me, why at least the 2 neurologists who I have communicated with would not look at deep sensory damage in respect of a recorded b12 deficiency because 'serum levels were now into normal."
And when it comes to MS and peripheral neuropathy - lets look at it another way (or two) Not every b12 patient gets peripheral neuropathy.
And when was the last time you heard of any patient with low b12 and any neurological symptoms getting every other day injects until symptoms stop improving?
You won't. Because a couple of days after treatment commences the serum levels return to normal and the treatment is withdrawn.
And you show me any MS patient who has had aggressive b12 treatment at the commencement of their illness.
Although I can show you a few that have had their b12 levels tested after MS was diagnosed and then they were offered an injection every 3 months.
I can also show you one MS patient who several years later had their diagnosed revised to b12 deficiency.
So the situation you have is this.
The patient goes to the doctor complaining of ... fatigue, blurred vision.
Doctor does a b12 (which is rare in itself) and the level is 201 (1 out of normal range)
What happens to that patient?
a) they are sent home and told to exercise more and take relaxation classes
b) they are referred on for further investigation.
On referral the b12 levels are checked again. This time they are 205. Still normal - can't be the b12.
The patient is given numerous scans, tests and exams. They are given a cocktail of drugs. What they aren't given is b12.
Let's take another scenario;
Patient goes to doctor complaining of fatigue and general overall weakness.
Doctor tests for b12. Comes back at 120.
GP asks about diet. Patient is not a vegetarian.
Patient told to eat more meat.
Patient gets worse. Vision deteriorates. Slight hair loss. Mood swings. But patient has increased meat.
Doctor now pronounces patient is a 'worrier' is 'stressed' cannot 'cope.
One year on b12 is checked again (they check annually) And b12 has gone up. Still deficient. Doc prescribes low dose tabs. b12 goes into normal range. Patient improves but is still complaining of lasting symptoms.
Patient referred to specialist.
B12 due to tabs is into normal range. What can be causing symptoms? Maybe MS?
That patient never, ever got aggressive treatment for b12 deficiency before medics start looking for the 'cause.'
As I say, I don't have an odd understanding, I have letters after my name so you've no need to be concerned about that.
What I would like you to do, is watch the film. Because it is clear you have not.
If you value education more than intelligence (and believe me they are not the same thing) then you better make sure that education is a good one.
Everybody who has watched the film knows that doctors in it clearly state that training in b12 deficiency is lacking.
And I'd also like to ask you a question:
With regard to Airfairy:
Recorded previous low b12 and considering symptoms. And considering your training. What would you do next and why? And do you think that patient is in any danger of permanent nerve damage because of her previous consultations and lack of treatment?
(and bear in mind that we all know you said you wanted to know if the levels were 'significant')
With regard to Airfairy:
Recorded previous low b12 and considering symptoms. And considering your training. What would you do next and why? And do you think that patient is in any danger of permanent nerve damage because of her previous consultations and lack of treatment?
(and bear in mind that we all know you said you wanted to know if the levels were 'significant')
Hslt - I'm not trying to put you on the spot here (and I didn't see the Times article but there was one about B12 in Prima) but can we clarify something?
What you are taught about is Pernicious Anaemia (for which I get brownie points because you will never forget it ever again) and to diagnose it you are looking for the standard microcytosis, and, maybe, instrinsic factor antibodies - and you also get taught about the stomach atrophy it causes. Maybe in most of these cases you wouldn't even test for b12 deficiency because the diagnosis is reliant on the other factors?
I think I've got that right?
In which case you would also be taught that this is a rare illness (hence your issue with remembering what they called it - it's not anything you are likely to see often, right?
But doctors aren't taught that a b12 deficiency on it's own, is anything serious. They are taught about the early symptoms such as fatigue and sore tongue, but they are also taught that a quick blast with b12 with 3 monthly maintanence doses will put it right?
I'm just clarifying here - not to have a go at you but to make people understand out there what doctors are taught and what they genuinely believe to be correct.
What you are taught about is Pernicious Anaemia (for which I get brownie points because you will never forget it ever again) and to diagnose it you are looking for the standard microcytosis, and, maybe, instrinsic factor antibodies - and you also get taught about the stomach atrophy it causes. Maybe in most of these cases you wouldn't even test for b12 deficiency because the diagnosis is reliant on the other factors?
I think I've got that right?
In which case you would also be taught that this is a rare illness (hence your issue with remembering what they called it - it's not anything you are likely to see often, right?
But doctors aren't taught that a b12 deficiency on it's own, is anything serious. They are taught about the early symptoms such as fatigue and sore tongue, but they are also taught that a quick blast with b12 with 3 monthly maintanence doses will put it right?
I'm just clarifying here - not to have a go at you but to make people understand out there what doctors are taught and what they genuinely believe to be correct.
Always wondered what to do when doctors cAnt figure out what's wrong.
The terrible thing about b12 deficiency is that it is a lethal illness. It's fatal if not treated correctly.
The thing is doctors really aren't taught much about it, so you can literally be dying from b12 deficiency and they won't identify the cause. Even if they treat the b12, the blood levels (which they are taught to diagnose from) go up straight away. But it means nothing.
And there are b12 deficient patients everywhere.
You can speak to any nurse and ask about b12 and they will tell you that patients get an injection once every 3 months. They will also tell you that they always get patients coming back saying they need more b12 because their symptoms are returning - but in most cases these patients are sent home.
What do you do?
If doctors believe they are taught about b12 (because they are taught about pernicious anaemia - which is b12 deficiency but where the bloods also reveal anaemia) but aren't taught that a stand alone b12 deficiency is fatal if not treated correctly - who do we turn to?
What we have to do is make sure the doctors of tomorrow are well informed about this. We have to make them question their training.
The one question they can all ask themselves is: What function does b12 perform in the body?
The next question should be: what happens to that body when it does not have enough b12? The answer to that one is - ANYTHING!
The thing is doctors really aren't taught much about it, so you can literally be dying from b12 deficiency and they won't identify the cause. Even if they treat the b12, the blood levels (which they are taught to diagnose from) go up straight away. But it means nothing.
And there are b12 deficient patients everywhere.
You can speak to any nurse and ask about b12 and they will tell you that patients get an injection once every 3 months. They will also tell you that they always get patients coming back saying they need more b12 because their symptoms are returning - but in most cases these patients are sent home.
What do you do?
If doctors believe they are taught about b12 (because they are taught about pernicious anaemia - which is b12 deficiency but where the bloods also reveal anaemia) but aren't taught that a stand alone b12 deficiency is fatal if not treated correctly - who do we turn to?
What we have to do is make sure the doctors of tomorrow are well informed about this. We have to make them question their training.
The one question they can all ask themselves is: What function does b12 perform in the body?
The next question should be: what happens to that body when it does not have enough b12? The answer to that one is - ANYTHING!
Original post by Kayteetoo
In my case I took 2,000mcgs and I knew within 2 hours that there was improvement in both my blurred vision and clarity of thought. I then took another 1,000mcgs.
In my case I took 2,000mcgs and I knew within 2 hours that there was improvement in both my blurred vision and clarity of thought. I then took another 1,000mcgs.
By what pathological mechanism do you think that your latent B12 deficiency was causing these symptoms? Demyelination?
Again we are back to the question - what function does b12 perform? It's function is primarily to myelinate. If that doesn't happen then the axon does not carry signals correctly and ultimately you get axonal death. This is one of the reasons you get permanent physical injuries.
Sorry, I meant to say (and I managed to wipe it off) that more recent studies have proven that any absorption that takes place does so within 3 hours of treatment. To me that makes sense because I knew that within 2 hours that it was working. Bearing in mind that at that point - to try and read a book (haha) I had to have large print, a magnifying glass and a book light. Even then my eyes would start to run uncontrollably after a paragraph or so. Taking the pain out of my eyes was wonderful!
A few years prior to my problems I had 20/20 vision.
Sorry, I meant to say (and I managed to wipe it off) that more recent studies have proven that any absorption that takes place does so within 3 hours of treatment. To me that makes sense because I knew that within 2 hours that it was working. Bearing in mind that at that point - to try and read a book (haha) I had to have large print, a magnifying glass and a book light. Even then my eyes would start to run uncontrollably after a paragraph or so. Taking the pain out of my eyes was wonderful!
A few years prior to my problems I had 20/20 vision.
(edited 10 years ago)
I'm in tears right now. I've been out since 9am this morning to a funeral. Within hours I felt indescribably tired, sore stomach and headache. I was sat through everything praying to get home to my bed. I can't live a normal life anymore and it's really getting me down. The rest of the family have gone out but i had to tell them i just cant. The tiredness is the main thing, but when you tell people you're tired they normally just say me too, but I dont think people understand. I don't know what I'll do if these tablets don't work. If I go back to the doctors they will eventually probably label me with chronic fatigue syndrome and that's it then, for the rest of my life.
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Posted from TSR Mobile
Now you listen here - yes, it's crap - but look at the point in history where you have entered this arena: we have the internet, we have that film, you have access to oral b12, things are changing. Think of all those poor people who went before; the people in the 1950s and 60s and 70s - even a decade ago you probably didn't stand a chance.
I know we can't even be certain that is what is wrong with you and heaven knows the injections would answer this one way or the other - but at the moment that option isn't open to you. But, heck if you got that desperate, you take a trip to paris and buy some hydroxo injections in a pharmacy.
It's only the UK that the things aren't available over the counter.
Hang on in there - I know I'm a zero tolerance motivator (I've been told before!) but it could be a lot, lot worse.
I know we can't even be certain that is what is wrong with you and heaven knows the injections would answer this one way or the other - but at the moment that option isn't open to you. But, heck if you got that desperate, you take a trip to paris and buy some hydroxo injections in a pharmacy.
It's only the UK that the things aren't available over the counter.
Hang on in there - I know I'm a zero tolerance motivator (I've been told before!) but it could be a lot, lot worse.
Original post by Kayteetoo
Again we are back to the question - what function does b12 perform? It's function is primarily to myelinate. If that doesn't happen then the axon does not carry signals correctly and ultimately you get axonal death. This is one of the reasons you get permanent physical injuries.
Sorry, I meant to say (and I managed to wipe it off) that more recent studies have proven that any absorption that takes place does so within 3 hours of treatment. To me that makes sense because I knew that within 2 hours that it was working.
Sorry, I meant to say (and I managed to wipe it off) that more recent studies have proven that any absorption that takes place does so within 3 hours of treatment. To me that makes sense because I knew that within 2 hours that it was working.
So you absorbed the B12 and the nerves remyelinated within 2 hours?
No. And I certainly wasn't cured.
But the cells were certainly taking up the b12 enough to notice some improvement.
And this is absolutely consistent with findings stemming back as far as the 1920s with regards to patients reporting some improvements and since the more recent studies state that any b12 cell absorption is complete within 3 hours, again this is consistent.
I am presuming, and it is only a presumption - that demyelination is not equal throughout the body. Therefore you may get areas that are demyelinated to a lesser extent and some are totally demyelinated. Where the damage is less and the nerve is simply 'misfiring' then maybe this is enough to stop that process?
What is your understanding of how b12 works and the damage caused by demyelination?
And did you watch the film? - I have to ask cos it saves going round in circles.
And I'll also just edit this to say:
There was one study done not many years ago. The took several patients who were diagnosed b12 deficiency, had variable disabilities and gave them MRIs prior to treatment. All of them on the initial scan showed demyelination. They were all treated and had MRIs throughout the study to see the effects. All the patients physical symptoms responded to the b12 treatment to some extent or another. The worst being patients who were permanently bed-ridden - and remained that way even after treatment. Yet the MRI's started to show less and less damage. I think (don't quote me!) the damage totally repaired in the shortest time in 3 weeks and the longest was definitely 9 months. So, you end up with patients who are still disabled but the MRI's show nothing.
But the cells were certainly taking up the b12 enough to notice some improvement.
And this is absolutely consistent with findings stemming back as far as the 1920s with regards to patients reporting some improvements and since the more recent studies state that any b12 cell absorption is complete within 3 hours, again this is consistent.
I am presuming, and it is only a presumption - that demyelination is not equal throughout the body. Therefore you may get areas that are demyelinated to a lesser extent and some are totally demyelinated. Where the damage is less and the nerve is simply 'misfiring' then maybe this is enough to stop that process?
What is your understanding of how b12 works and the damage caused by demyelination?
And did you watch the film? - I have to ask cos it saves going round in circles.
And I'll also just edit this to say:
There was one study done not many years ago. The took several patients who were diagnosed b12 deficiency, had variable disabilities and gave them MRIs prior to treatment. All of them on the initial scan showed demyelination. They were all treated and had MRIs throughout the study to see the effects. All the patients physical symptoms responded to the b12 treatment to some extent or another. The worst being patients who were permanently bed-ridden - and remained that way even after treatment. Yet the MRI's started to show less and less damage. I think (don't quote me!) the damage totally repaired in the shortest time in 3 weeks and the longest was definitely 9 months. So, you end up with patients who are still disabled but the MRI's show nothing.
(edited 10 years ago)
Original post by Kayteetoo
No. And I certainly wasn't cured.
But the cells were certainly taking up the b12 enough to notice some improvement.
And this is absolutely consistent with findings stemming back as far as the 1920s with regards to patients reporting some improvements and since the more recent studies state that any b12 cell absorption is complete within 3 hours, again this is consistent.
I am presuming, and it is only a presumption - that demyelination is not equal throughout the body. Therefore you may get areas that are demyelinated to a lesser extent and some are totally demyelinated. Where the damage is less and the nerve is simply 'misfiring' then maybe this is enough to stop that process?
What is your understanding of how b12 works and the damage caused by demyelination?
And did you watch the film? - I have to ask cos it saves going round in circles.
And I'll also just edit this to say:
There was one study done not many years ago. The took several patients who were diagnosed b12 deficiency, had variable disabilities and gave them MRIs prior to treatment. All of them on the initial scan showed demyelination. They were all treated and had MRIs throughout the study to see the effects. All the patients physical symptoms responded to the b12 treatment to some extent or another. The worst being patients who were permanently bed-ridden - and remained that way even after treatment. Yet the MRI's started to show less and less damage. I think (don't quote me!) the damage totally repaired in the shortest time in 3 weeks and the longest was definitely 9 months. So, you end up with patients who are still disabled but the MRI's show nothing.
But the cells were certainly taking up the b12 enough to notice some improvement.
And this is absolutely consistent with findings stemming back as far as the 1920s with regards to patients reporting some improvements and since the more recent studies state that any b12 cell absorption is complete within 3 hours, again this is consistent.
I am presuming, and it is only a presumption - that demyelination is not equal throughout the body. Therefore you may get areas that are demyelinated to a lesser extent and some are totally demyelinated. Where the damage is less and the nerve is simply 'misfiring' then maybe this is enough to stop that process?
What is your understanding of how b12 works and the damage caused by demyelination?
And did you watch the film? - I have to ask cos it saves going round in circles.
And I'll also just edit this to say:
There was one study done not many years ago. The took several patients who were diagnosed b12 deficiency, had variable disabilities and gave them MRIs prior to treatment. All of them on the initial scan showed demyelination. They were all treated and had MRIs throughout the study to see the effects. All the patients physical symptoms responded to the b12 treatment to some extent or another. The worst being patients who were permanently bed-ridden - and remained that way even after treatment. Yet the MRI's started to show less and less damage. I think (don't quote me!) the damage totally repaired in the shortest time in 3 weeks and the longest was definitely 9 months. So, you end up with patients who are still disabled but the MRI's show nothing.
Ok. You say there are papers that say B12 is absorbed within three hours. I won't argue with that. How long does protein synthesis and remyelination take?
I'm not going to lie to you - I haven't watched your one hour youtube video. I will also say that I am by no means an expert in B12 deficiencies but I have received a fairly decent medical education on the topic and have seen a fair number of patients with B12 deficiencies.
However, as you specifically ask, it is my understanding that B12 is an essential cofactor for methionine synthase and methylmalonyl-CoA synthase. Without these you see impairment of homocysteine which accounts for the defective DNA synthesis and subsequent macrocytic anaemia. In addition, the build-up of methylmalonyl-CoA is responsible for the defective fatty acids seen to cause myelin break down (hence dorsal/lateral spinal cord degeneration). This degeneration manifests itself as the classical combination of extensor plantars, absent lower limb reflexes, ataxia and parasthesia (and beyond).
Generally, I resent your statement that doctors are not taught that B12 deficiency has serious complications. In addition, we are frequently reminded to 'treat the patient, not the blood tests' and we are aware that the specific cut-off points for 'normal ranges' are arbitrary to some extent. Not to mention the fact that failing to identify and manage B12 deficiency in patients known to be at risk is amountable to negligence. Believe it or not, medics are there to help you.
(edited 10 years ago)
So, you will be able to explain to me how the proteins are broken down in the body so the enterohepatic circulatory system can function effectively.
Also I think you will find that it isn't actually impairment of homocysteine but a build up. Neither do you necessarily get macrocytic anaemia if there is a coinciding iron deficiency because blood cells are normalised. The same goes for masking with folate supplementation. This is one area where your education fails. You are waiting, yet again, for the anaemia before you tie it in with demyelination.
Whether you resent my statements or not is of no concern to me. You seem to be trying to prove that the problems associated with b12 deficiency don't exist yet you openly admit you haven't watched the video. That is your perogative. There is however a bio-chemist in it that has studied b12 deficiency for 40 years. There is a GP who nearly died with it. If you want to taken science as a personal affront, that is your weakness.
I haven't got a clue how long the protein synthesis takes (but, like you, I could look it up) and remyelination as would appear from the study to depend on the damage sustained in the first place. Unless of course all damage is equal and all treatment is equal?
You have to accept that I don't care whether you are offended because I'm not out to impress you. I'm out to get doctors to think and to warn patients of what is happening. If you intend to be a doctor that doesn't want to think, that can't be bothered to watch an 'hour long' video, that doesn't want to listen to patients, that can't be challenged on any subject, that is your choice. But there are doctors out there that are willing to think.
And please, don't get back to me on this with any more questions until you've watched the video which may answer an awful lot of them because it's just wasting my time.
And if you take your last paragraph, you might want to show it to Airfairy. I think she might disagree with how seriously medics take b12 deficiency and how they are trying to help her.
Also I think you will find that it isn't actually impairment of homocysteine but a build up. Neither do you necessarily get macrocytic anaemia if there is a coinciding iron deficiency because blood cells are normalised. The same goes for masking with folate supplementation. This is one area where your education fails. You are waiting, yet again, for the anaemia before you tie it in with demyelination.
Whether you resent my statements or not is of no concern to me. You seem to be trying to prove that the problems associated with b12 deficiency don't exist yet you openly admit you haven't watched the video. That is your perogative. There is however a bio-chemist in it that has studied b12 deficiency for 40 years. There is a GP who nearly died with it. If you want to taken science as a personal affront, that is your weakness.
I haven't got a clue how long the protein synthesis takes (but, like you, I could look it up) and remyelination as would appear from the study to depend on the damage sustained in the first place. Unless of course all damage is equal and all treatment is equal?
You have to accept that I don't care whether you are offended because I'm not out to impress you. I'm out to get doctors to think and to warn patients of what is happening. If you intend to be a doctor that doesn't want to think, that can't be bothered to watch an 'hour long' video, that doesn't want to listen to patients, that can't be challenged on any subject, that is your choice. But there are doctors out there that are willing to think.
And please, don't get back to me on this with any more questions until you've watched the video which may answer an awful lot of them because it's just wasting my time.
And if you take your last paragraph, you might want to show it to Airfairy. I think she might disagree with how seriously medics take b12 deficiency and how they are trying to help her.
(edited 10 years ago)
Original post by Kayteetoo
I haven't got a clue how long the protein synthesis takes (but, like you, I could look it up) and remyelination as would appear from the study to depend on the damage sustained in the first place. Unless of course all damage is equal and all treatment is equal?
I'm just applying a healthy and polite level of critical thought to the assumtions that you are making. No, all damage is not equal, but you need a reasonable amount of demyelination to cause visual disturbance and ultimately, protein synthesis is protein synthesis. It's certainly not a rapid process. Justsayin.
Neither do you necessarily get macrocytic anaemia if there is a coinciding iron deficiency
Yep, iron deficiency anaemias can mask macrocytosis. I am well aware of this. Just because I didn't sit here and type out every fact I know about a topic doesn't mean that I am not aware of additional information. By this logic I could accuse you of not knowing the sky was blue because you neglected to mention it.
The same goes for masking with folate supplementation. This is one area where your education fails. You are waiting, yet again, for the anaemia before you tie it in with demyelination.
Again, see above. I am well aware of the fact that neuronal damage can occur before anaemia. I didn't say anything that suggested otherwise.
Whether you resent my statements or not is of no concern to me. You seem to be trying to prove that the problems associated with b12 deficiency don't exist yet you openly admit you haven't watched the video. That is your perogative. There is however a bio-chemist in it that has studied b12 deficiency for 40 years. There is a GP who nearly died with it. If you want to taken science as a personal affront, that is your weakness.
How am I trying to 'prove that the problems associated with b12 deficiency don't exist'? I've specifically described a number of severe complications and I see it in the flesh very frequently. You're getting defensive to the point where you're misrepresenting what I'm saying to you. My working life is based around science and evidence based practice.
You have to accept that I don't care whether you are offended because I'm not out to impress you. I'm out to get doctors to think and to warn patients of what is happening. If you intend to be a doctor that doesn't want to think, that can't be bothered to watch an 'hour long' video, that doesn't want to listen to patients, that can't be challenged on any subject, that is your choice. But there are doctors out there that are willing to think.
Again, you're intentionally using inflammatory language which isn't going to serve your purpose at all. I'm trying to have a sensible discussion with you and you're flying off the handle and demanding that I type out everything I know on x topic.
(edited 10 years ago)
Why don't you just go watch the video.
And then you can come back and make helpful suggestions to Airfairy.
"I'm just applying a healthy and polite level of critical thought to the assumtions that you are making. No, all damage is not equal, but you need a reasonable amount of demyelination to cause visual disturbance and ultimately, protein synthesis is protein synthesis. It's certainly not a rapid process. Justsayin."
And with regard to this comment - I don't know why it improved as it did. I do know that it took 6,000mcgs to get my levels up to 178. With that level of medication it should (according to a top haemo, have gone 2000+) Maybe I improved so quickly because I was dying? I honestly don't know. But I do know that cells take it up within 3 hours.
Again, the implication is, that the patient is lying because the medics can't find the supporting science (or don't want to look for it?)
But then you never asked me about my situation - did you?
Or, another thought - maybe it improved so quickly because I took methylcobalamin rather than cyano or hydroxo - so no conversion was necessary.
Never thought about it before.
But, since we seem to have got on to the subject of the methylation process maybe you can explain to Airfairy the difference between the different cobalamins and why some are more effective than others. And why the NHS doesn't supply the most effective?
And then you can come back and make helpful suggestions to Airfairy.
"I'm just applying a healthy and polite level of critical thought to the assumtions that you are making. No, all damage is not equal, but you need a reasonable amount of demyelination to cause visual disturbance and ultimately, protein synthesis is protein synthesis. It's certainly not a rapid process. Justsayin."
And with regard to this comment - I don't know why it improved as it did. I do know that it took 6,000mcgs to get my levels up to 178. With that level of medication it should (according to a top haemo, have gone 2000+) Maybe I improved so quickly because I was dying? I honestly don't know. But I do know that cells take it up within 3 hours.
Again, the implication is, that the patient is lying because the medics can't find the supporting science (or don't want to look for it?)
But then you never asked me about my situation - did you?
Or, another thought - maybe it improved so quickly because I took methylcobalamin rather than cyano or hydroxo - so no conversion was necessary.
Never thought about it before.
But, since we seem to have got on to the subject of the methylation process maybe you can explain to Airfairy the difference between the different cobalamins and why some are more effective than others. And why the NHS doesn't supply the most effective?
(edited 10 years ago)
Original post by Kayteetoo
Why don't you just go watch the video.
And then you can come back and make helpful suggestions to Airfairy.
And then you can come back and make helpful suggestions to Airfairy.
To be honest, I don't think your suggestions have been that helpful. Infact, they've been downright confusing. Here's why:
1. In your first post, you straight away assume that her symptoms of depression and 'feeling unwell' are due to her B12 deficiency. Yet at that point you had no real information about what she meant by 'feeling unwell'. For all you know, she could have been referring to a painful leg caused by osteomyelitis. That's obviously extreme, but the point is, it's clear that you have an agenda and you jumped in there without any real information. Alarm bells are already ringing.
2. She tells you that she has taken oral B12 and it didn't help. You attribute this to poor oral absorption. But she then goes on to tell you that her serum B12 eventually increased after supplementation. However you go on to say "If you've also been supplementing, this will raise the serum b12 level". How is that true if you say she's not absorbing it in the first place? You're hammering the info to fit your theory and ignoring the contradictions as you go.
3. You keep wheeling out this GP who died as evidence for your cause. You then suggest to OP that she might die of this latent B12 deficiency. "Show her this stuff. I'm a bit of a spitfire myself and it saved my life - your mum might just save yours!".. Do you really think that OP is going to pop her clogs suddenly with no intermediate gross symptomology in between? You're intentionally using emotive manipulation to push your agenda. Again, alarm bells that you might not quite have your logic hat on.
4. Skip a few pages in the thread and the most we have established in regards to her symptoms include 'depression, anxiety and stomach problems'. These are impossibly vague notions. It's impossible to apply any clinical acumen with such little information. Yet you haven't bothered to elaborate on what she actually means by these terms. Instead, you vaguely refer to 'her symptoms' and continue to push your B12 agenda with no indication to guide you.
This is a clear case of "treat the patient, not the blood test". You're obsessing over her abnormal blood test (regardless of whether the test is valid or not). In reality, you don't actually have any information about what her symptoms are. Instead you're trying to pump her full of supplements based on your own agenda.
(edited 10 years ago)
Oh wow, you are so wrong on so many levels.
B12 supplementation pushes serum b12 levels up. It does not mean it is being absorbed at cellular level. The b12 still has to cross the blood/brain barrier.
Can you not just take time out to watch the Murphy and Minot video which only takes about 7 minutes and only talks about rectifying RBC and reticulocytes but you can see how quickly these are affected - seriously you are making a fool of yourself.
You obviously don't know the symptoms of b12 deficiency.
You make the assumption that b12 is treated simply because the blood levels have gone up - they knew more than this in 1926!!!!
I have never said a GP died. Ever.
The main symptoms are depression and anxiety.
What do you think the symptoms are?
Stomach problems are a big issue because one of the main causes is achlorhydria.
You accuse me of 'trying to pump her full of vitamins.'
No, according to BNF guidelines patients who have a low b12 (and hers when it was tested was significantly low) and 'suspected' neurological symptoms, should be treated every other day until no further improvement.
Do you think it is better to leave the patient until they prove they are ill by getting worse instead of giving them vitamins as recommended by the British National Formulary?
You really don't listen to anything anyone says.
And because I wanted to know - remyelination takes up to 9 months - which ties in nicely with the MRI study that I mentioned earlier.
Protein synthasis takes place at the rate of 10 -15 amino acid bases per second. The size of the proteins can also vary between dozens to thousands of amino acid units, so it can take anything from less than a minute onwards to make one.
Quite quick, isn't it?
B12 supplementation pushes serum b12 levels up. It does not mean it is being absorbed at cellular level. The b12 still has to cross the blood/brain barrier.
Can you not just take time out to watch the Murphy and Minot video which only takes about 7 minutes and only talks about rectifying RBC and reticulocytes but you can see how quickly these are affected - seriously you are making a fool of yourself.
You obviously don't know the symptoms of b12 deficiency.
You make the assumption that b12 is treated simply because the blood levels have gone up - they knew more than this in 1926!!!!
I have never said a GP died. Ever.
The main symptoms are depression and anxiety.
What do you think the symptoms are?
Stomach problems are a big issue because one of the main causes is achlorhydria.
You accuse me of 'trying to pump her full of vitamins.'
No, according to BNF guidelines patients who have a low b12 (and hers when it was tested was significantly low) and 'suspected' neurological symptoms, should be treated every other day until no further improvement.
Do you think it is better to leave the patient until they prove they are ill by getting worse instead of giving them vitamins as recommended by the British National Formulary?
You really don't listen to anything anyone says.
And because I wanted to know - remyelination takes up to 9 months - which ties in nicely with the MRI study that I mentioned earlier.
Protein synthasis takes place at the rate of 10 -15 amino acid bases per second. The size of the proteins can also vary between dozens to thousands of amino acid units, so it can take anything from less than a minute onwards to make one.
Quite quick, isn't it?
(edited 10 years ago)
Original post by Kayteetoo
Oh wow, you are so wrong on so many levels.
B12 supplementation pushes serum b12 levels up. It does not mean it is being absorbed at cellular level. The b12 still has to cross the blood/brain barrier.
Can you not just take time out to watch the Murphy and Minot video which only takes about 7 minutes and only talks about rectifying RBC and reticulocytes but you can see how quickly these are affected - seriously you are making a fool of yourself.
You obviously don't know the symptoms of b12 deficiency.
You make the assumption that b12 is treated simply because the blood levels have gone up - they knew more than this in 1926!!!!
I have never said a GP died. Ever.
The main symptoms are depression and anxiety.
What do you think the symptoms are?
Stomach problems are a big issue because one of the main causes is achlorhydria.
You accuse me of 'trying to pump her full of vitamins.'
No, according to BNF guidelines patients who have a low b12 (and hers when it was tested was significantly low) and 'suspected' neurological symptoms, should be treated every other day until no further improvement.
Do you think it is better to leave the patient until they prove they are ill by getting worse instead of giving them vitamins as recommended by the British National Formulary?
You really don't listen to anything anyone says.
B12 supplementation pushes serum b12 levels up. It does not mean it is being absorbed at cellular level. The b12 still has to cross the blood/brain barrier.
Can you not just take time out to watch the Murphy and Minot video which only takes about 7 minutes and only talks about rectifying RBC and reticulocytes but you can see how quickly these are affected - seriously you are making a fool of yourself.
You obviously don't know the symptoms of b12 deficiency.
You make the assumption that b12 is treated simply because the blood levels have gone up - they knew more than this in 1926!!!!
I have never said a GP died. Ever.
The main symptoms are depression and anxiety.
What do you think the symptoms are?
Stomach problems are a big issue because one of the main causes is achlorhydria.
You accuse me of 'trying to pump her full of vitamins.'
No, according to BNF guidelines patients who have a low b12 (and hers when it was tested was significantly low) and 'suspected' neurological symptoms, should be treated every other day until no further improvement.
Do you think it is better to leave the patient until they prove they are ill by getting worse instead of giving them vitamins as recommended by the British National Formulary?
You really don't listen to anything anyone says.
The simple facts are these: You don't really have any insight to the symptoms that OP is experiencing because you haven't bothered to ask. Despite this ignorance, you have continually assumed that B12 is responsible because you have an agenda.
She mentioned abdominal pain and yet you haven't bothered to establish what she means by that. You don't even have enough information to establish whether this is gastrointestinal pain. It could be gynaecological, musculoskeletal, urinary, hell even cardiovascular. But nope, you're still pushing your B12 agenda.
She has mentioned depression. You haven't asked her about this. What does she mean by depression? Is she sad sometimes? Is she having persecutory delusions? Is she depressed because of xyz social factors? Does she have manic episodes? But again, nope, it doesn't matter because it's definitely because of B12, right?
Finally she mentioned anxiety. I could go through it again, but I hope you see my point.
You accuse me of 'not listening', when in actual fact, you know nothing about OP's circumstances. You didn't even bother to ask.
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