30 Oct 2013 at 2:10PM
What you have to remember is that once you start taking b12
supplements it will wipe out any evidence of a deficiency on your blood
test results.
Also, if any damage is caused by b12 deficiency, repair depends on the severity and length of the deficiency.
I would very much doubt if you could get a doctor to support supplementation but by the same token I doubt if you would get a doctor to confirm it would do you any harm.
You can buy tabs on the net. I can't comment on the other stuff like patches, sprays etc, because I've never used them, but the tablets/lozenges are freely available in 1,000mcg form. The most recommended kind of b12 is methylcobalamin.
There is no law against buying them, so you aren't doing anything wrong.
If you do get any improvements, then your doctor will just attribute it to coincidence anyway.
Or, you could move to Japan and see what they do there. Okay, so maybe a tad extreme...
Also, if any damage is caused by b12 deficiency, repair depends on the severity and length of the deficiency.
I would very much doubt if you could get a doctor to support supplementation but by the same token I doubt if you would get a doctor to confirm it would do you any harm.
You can buy tabs on the net. I can't comment on the other stuff like patches, sprays etc, because I've never used them, but the tablets/lozenges are freely available in 1,000mcg form. The most recommended kind of b12 is methylcobalamin.
There is no law against buying them, so you aren't doing anything wrong.
If you do get any improvements, then your doctor will just attribute it to coincidence anyway.
Or, you could move to Japan and see what they do there. Okay, so maybe a tad extreme...
30 Oct 2013 at 2:18PM
Sunshine, you can't just tell me it doesn't show in CSF, you
have to point me to the research. B12, as I have been writing, does not
always show in bloods. It is not the best diagnostic technique. The
studies aren't all over the internet, I can't find them. I need to know
more before I just take the statement at face value.
I really don't care what the medical professionals 'say' - because I've emails here from 'specialists' that tell me b12 deficiency is only serious if accompanied by 'severe' anaemia. MYTH.
It's a load of codswallop. Sorry Stewart, frustration with doctors not Sunshine.
Yesss - how often do you get the jabs and what kind of b12 (just out of interest)
I really don't care what the medical professionals 'say' - because I've emails here from 'specialists' that tell me b12 deficiency is only serious if accompanied by 'severe' anaemia. MYTH.
It's a load of codswallop. Sorry Stewart, frustration with doctors not Sunshine.
Yesss - how often do you get the jabs and what kind of b12 (just out of interest)
30 Oct 2013 at 2:26PM
Ooh, I do wish there was an edit facility.
When it comes to whether MS patients have a b12 deficiency - again we are back to the serum b12 test. This test is very specific for b12 but it only shows up the b12 in the blood. It also picks up inactive b12 - b12 that cannot be transported to cells.So, the figures state that this test can be between 20 - 80% inaccurate.
So, you get two people with MS going into a study. The normal assay range is say 200-700. One has a serum b12 level of 199 (deficient) and one has a serum b12 level of 201 (not deficient)
Yet that test can be up to 80% inaccurate in ascertaining whether that non deficient person has a functional b12 deficiency.
We know now, and the film is showing this, that there are warnings going out (not in Europe) to doctors to not disregard b12 levels if they come into the grey area and the patient is symptomatic. So, someone with a level in between 200-400 who has symptoms, should be treated as if they are deficient.
Are they doing that. No.
Again we can go back to Japan. How many MS patients would also be considered to be b12 deficient when deficient would be classed as being less than 500?
Or to look at it another way, do they have fewer MS patients because b12 is tested earlier and patients are treated with b12 sooner if there levels are below 500?
When it comes to whether MS patients have a b12 deficiency - again we are back to the serum b12 test. This test is very specific for b12 but it only shows up the b12 in the blood. It also picks up inactive b12 - b12 that cannot be transported to cells.So, the figures state that this test can be between 20 - 80% inaccurate.
So, you get two people with MS going into a study. The normal assay range is say 200-700. One has a serum b12 level of 199 (deficient) and one has a serum b12 level of 201 (not deficient)
Yet that test can be up to 80% inaccurate in ascertaining whether that non deficient person has a functional b12 deficiency.
We know now, and the film is showing this, that there are warnings going out (not in Europe) to doctors to not disregard b12 levels if they come into the grey area and the patient is symptomatic. So, someone with a level in between 200-400 who has symptoms, should be treated as if they are deficient.
Are they doing that. No.
Again we can go back to Japan. How many MS patients would also be considered to be b12 deficient when deficient would be classed as being less than 500?
Or to look at it another way, do they have fewer MS patients because b12 is tested earlier and patients are treated with b12 sooner if there levels are below 500?
30 Oct 2013 at 2:26PM
They've done studies on oglioclonal bands - if you search the
internet for causes of oglioclonal bands you will find lots of evidence
30 Oct 2013 at 2:46PM
Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?
You seem very passionate and knowledgable about this, how long have you been on B12 and have you noticed any benefits since starting?
You seem very passionate and knowledgable about this, how long have you been on B12 and have you noticed any benefits since starting?
30 Oct 2013 at 2:50PM
Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?
You seem very passionate and knowledgeable about this, how long have you been on B12 and have you noticed any benefits since starting?
You seem very passionate and knowledgeable about this, how long have you been on B12 and have you noticed any benefits since starting?
30 Oct 2013 at 2:53PM
Yes the have but not comparitive to b12 deficiency.
And again, I state, you have to see all the studies to see how they established their base line. If you give me a link to one of these, I will be more than happy to read it.
But if they are simply using serum b12 then the studies aren't worth the paper they are written on.
If these doctors are so sure of themselves. If they are so up to speed on what b12 deficiency does and it being a demyelinating illness and sure that the treatment they are giving is correct - why aren't they commenting on that film?
Why aren't they saying it's a load of rubbish? Why aren't they putting forward contra-evidence? Why aren't they coming forward with these studies and linking to them?
It's now had over 70,000 hits. I've sent it to numerous clinicians and asked for comments. I've only had one response - and he agreed to alter his website after watching it.
In short they either don't bother to watch it (because they think they know it all) or they do watch it and are stunned into silence.
It's amazing how many people don't watch it and then make out that they have. I've got an (ex) friend who keeps doing this. It's quite obvious he's lying ... but I just let him. He'll watch it one day and realise what a fool he was making of himself.
Sunshine, if you want to comment on any of the aspects of the film, I'd be pleased to hear it. I'm always interested to hear what queries people have, what problems they have with, what message isn't getting across.
And again, I state, you have to see all the studies to see how they established their base line. If you give me a link to one of these, I will be more than happy to read it.
But if they are simply using serum b12 then the studies aren't worth the paper they are written on.
If these doctors are so sure of themselves. If they are so up to speed on what b12 deficiency does and it being a demyelinating illness and sure that the treatment they are giving is correct - why aren't they commenting on that film?
Why aren't they saying it's a load of rubbish? Why aren't they putting forward contra-evidence? Why aren't they coming forward with these studies and linking to them?
It's now had over 70,000 hits. I've sent it to numerous clinicians and asked for comments. I've only had one response - and he agreed to alter his website after watching it.
In short they either don't bother to watch it (because they think they know it all) or they do watch it and are stunned into silence.
It's amazing how many people don't watch it and then make out that they have. I've got an (ex) friend who keeps doing this. It's quite obvious he's lying ... but I just let him. He'll watch it one day and realise what a fool he was making of himself.
Sunshine, if you want to comment on any of the aspects of the film, I'd be pleased to hear it. I'm always interested to hear what queries people have, what problems they have with, what message isn't getting across.
30 Oct 2013 at 3:00PM
Yess - in the UK that is more than patients would normally be allowed. They normally get it once every 3 months.
In most of mainland europe that would be the standard maintenance dose for someone not having neurological implications.
In the UK the BNF (British National Formulary) states that for suspected neurological implications you should get every other day injections until there is no further improvement.
However, since doctors never attribute neurological implications to b12 deficiency (I am sure you will be aware of this after your tussle with the authorities) then no one ever gets this frequency and doctors look for another cause of the neuro implications.
I self inject, I use methyl. Have I noticed any improvement? Yes. I'm not dead.
I can't give you any more information than that at the moment. Sorry.
In most of mainland europe that would be the standard maintenance dose for someone not having neurological implications.
In the UK the BNF (British National Formulary) states that for suspected neurological implications you should get every other day injections until there is no further improvement.
However, since doctors never attribute neurological implications to b12 deficiency (I am sure you will be aware of this after your tussle with the authorities) then no one ever gets this frequency and doctors look for another cause of the neuro implications.
I self inject, I use methyl. Have I noticed any improvement? Yes. I'm not dead.
I can't give you any more information than that at the moment. Sorry.
Dear Karen2
Just another (and final) reminder that members should avoid: "multiple posts on the same subject".
I feel, it's safe to say, you've made your point, at length and with increasing gusto. As you have pointed out-
"I'm not dead. I can't give you any more information than that at the moment. Sorry."
In that case, it might be time to try another subject- anything, other than B12. Or maybe engage with other members in an understanding and supportive way (without mentioning b12)- which is best practice for this forum.
Your co-operation with our guidelines would be much appreciated
Stewart (admin)
Just another (and final) reminder that members should avoid: "multiple posts on the same subject".
I feel, it's safe to say, you've made your point, at length and with increasing gusto. As you have pointed out-
"I'm not dead. I can't give you any more information than that at the moment. Sorry."
In that case, it might be time to try another subject- anything, other than B12. Or maybe engage with other members in an understanding and supportive way (without mentioning b12)- which is best practice for this forum.
Your co-operation with our guidelines would be much appreciated
Stewart (admin)
30 Oct 2013 at 3:22PM
Also, Sunshine, I think I should make it clear - I am not out
to prove that MS doesn't exist or that everybody with MS is b12
deficient.
What I do know is, for a fact, that b12 deficiency in some cases is being misdiagnosed as MS. Since untreated b12 deficiency results in death, then if you have one member on here that has been misdiagnosed, surely their life is worth a little effort?
That is why I say to you that I want to see the research. I'm not being difficult, I just want to establish the facts. And, because I have experienced the medical profession making a multitude of mistakes, I examine the evidence. I no longer believe what they say to me until I've studied it myself. Because what I do understand is b12 deficiency and I can pick up basic errors in a study - failures that undermine a study to render it worthless.
If we are looking at evidence and causation then we have to sift the wheat from the chaff.
What I do know is, for a fact, that b12 deficiency in some cases is being misdiagnosed as MS. Since untreated b12 deficiency results in death, then if you have one member on here that has been misdiagnosed, surely their life is worth a little effort?
That is why I say to you that I want to see the research. I'm not being difficult, I just want to establish the facts. And, because I have experienced the medical profession making a multitude of mistakes, I examine the evidence. I no longer believe what they say to me until I've studied it myself. Because what I do understand is b12 deficiency and I can pick up basic errors in a study - failures that undermine a study to render it worthless.
If we are looking at evidence and causation then we have to sift the wheat from the chaff.
30 Oct 2013 at 3:26PM
I am a little disappointed you can't give me any more information than that, as i am very interested. :-(
Hope your ok though.
Hope your ok though.
30 Oct 2013 at 3:26PM
Sorry Stewart, I posted before I realised your post had gone up.
I'm sorry that you feel that way about a subject that seems to interest your members.
I'm sorry I can't give more information on my case but it's because of a legal matter that is currently on-going.
If b12 deficiency is going to be a mute point and not allowed to be discussed further - then maybe, as has been mentioned to me before, separate forums are opened where members can discuss freely and without restriction (Obviously not by yourselves!)
I'm sorry that you feel that way about a subject that seems to interest your members.
I'm sorry I can't give more information on my case but it's because of a legal matter that is currently on-going.
If b12 deficiency is going to be a mute point and not allowed to be discussed further - then maybe, as has been mentioned to me before, separate forums are opened where members can discuss freely and without restriction (Obviously not by yourselves!)
30 Oct 2013 at 3:42PM
lt is obvious that we are interested in this subject - as we
were sometime ago when Karen posted. To discontinue a thread that will
possibly make a big difference to somebody's condition is wrong.
Vitamin B12 deficiency is something l have found intriguing since
seeing the BBC programme about Dr Chandy. He is a GP - who was treating
his patients with B12 - many had symptoms very much like MS - he was
told to stop - but continued as he knew he would be failing his patients
care. After that l did some more research and found the books 'Could it
be B12' a eperdemic of misdiagnosis. So as soon as l saw Karens post l
felt at last someone who knows first-hand. And someone who can advise
us. l have never trusted GP/Neuros - in 31yrs of MS - l have heard a lot
of twaddle. Mainly because GP's have to stick to outdated - outmoded
restrictions.- which are detrimental to our well-being.
The difference between God and a Doctor
God does not think he is a Doctor.
Stewart - Could we have a seperate forum for B12 and D3.
The difference between God and a Doctor
God does not think he is a Doctor.
Stewart - Could we have a seperate forum for B12 and D3.
30 Oct 2013 at 3:50PM
Nice idea, Spacejacket.
You know Stewart, I'm not sat here making multiple postings to myself (although I'd make less if you had an edit function) I'm responding to what people are asking. if I didn't respond I'd be ignorant.
You know Stewart, I'm not sat here making multiple postings to myself (although I'd make less if you had an edit function) I'm responding to what people are asking. if I didn't respond I'd be ignorant.
Karen, you are of course entitled to your own opinion about
the medical profession and researchers. At the MS Society we take an
evidence based approach and want to provide people affected by MS with
the best possible evidence-based information.
When making decisions about what treatments to take there are lots of things to consider such as the financial costs, the health risks and the potential disappointment if the treatment doesn’t help. These are things we would encourage people to discuss with a health care professional before trying new treatments.
We have a new booklet called ‘I’ve got nothing to lose by trying it’ that might be an interesting read for many people.
http://www.mssociety.org.uk/ms-resources/ive-got-nothing-lose-trying-it
What treatments or therapies one choses to take is very much an individual decision. Of course, your personal experience and B12 deficiency symptoms are valid and you are welcome to share this on our forums.
We would like to provide a balanced view of this issue. So I have spoken to our research team about the role of B12 in MS. And this is what they told me…
People who have pernicious anaemia can't absorb enough vitamin B12 from food due to a lack of a protein made in the stomach. This leads to vitamin B12 deficiency.
One of the most notable studies to date includes research conducted by a group in Nottingham that looked at the occurrence of a number of conditions in 658 people with MS compared with the general population.
They found that the people with MS were more likely to have pernicious anaemia and vitamin B12 deficiency than the general population.
The link is not definitive and further research will be needed to confirm any link between pernicious anaemia and MS and to understand the relationship between the two conditions.
There also doesn’t seem to be any evidence to support the effectiveness of b12 injections (that some people may choose to take).
The clinical symptoms of b12 deficiency can be similar to MS and regarding the idea that b12 deficiency could make some symptoms worse, the evidence appears to be mixed.
Best wishes
Stewart (admin)
When making decisions about what treatments to take there are lots of things to consider such as the financial costs, the health risks and the potential disappointment if the treatment doesn’t help. These are things we would encourage people to discuss with a health care professional before trying new treatments.
We have a new booklet called ‘I’ve got nothing to lose by trying it’ that might be an interesting read for many people.
http://www.mssociety.org.uk/ms-resources/ive-got-nothing-lose-trying-it
What treatments or therapies one choses to take is very much an individual decision. Of course, your personal experience and B12 deficiency symptoms are valid and you are welcome to share this on our forums.
We would like to provide a balanced view of this issue. So I have spoken to our research team about the role of B12 in MS. And this is what they told me…
People who have pernicious anaemia can't absorb enough vitamin B12 from food due to a lack of a protein made in the stomach. This leads to vitamin B12 deficiency.
One of the most notable studies to date includes research conducted by a group in Nottingham that looked at the occurrence of a number of conditions in 658 people with MS compared with the general population.
They found that the people with MS were more likely to have pernicious anaemia and vitamin B12 deficiency than the general population.
The link is not definitive and further research will be needed to confirm any link between pernicious anaemia and MS and to understand the relationship between the two conditions.
There also doesn’t seem to be any evidence to support the effectiveness of b12 injections (that some people may choose to take).
The clinical symptoms of b12 deficiency can be similar to MS and regarding the idea that b12 deficiency could make some symptoms worse, the evidence appears to be mixed.
Best wishes
Stewart (admin)
30 Oct 2013 at 5:57PM
Thank you, Stewart.
I think maybe the point that has been missed, is not that some patients with MS may have an additional b12 deficiency but that they have been misdiagnosed with MS when in fact they have a b12 deficiency.
I have been looking up the O bands that Sunshine mentioned, but although some references are made to the study, I can't find the study. However, what is clear is that it is very difficult - excluding the O band situation - for doctors to differentiate between b12 deficiency and MS.
I also understand what your research team are talking about in respect of intrinsic factor antibodies in respect of b12 absorption. However the major cause of b12 malabsorption is low stomach acid. This is a failing on the part of the parietal cells to release enough stomach acid. Murphy - one half of the Nobel Prize team that discovered the treatment for b12 deficiency, did much work in this region.
Very interesting to note however that recent research suggests MS patients are likely to be b12 deficient, although if you could link to the study showing the injections were not of benefit to them, I would much appreciate. Benefits are dependant on frequency and dosage - so the statement that they weren't of benefit means little until you know what the treatment was.
Also it would be helpful, not only to me but to the members, to link to the research that suggests b12 could actually make MS patients worse? I've never heard of this and I've read an awful lot of research papers today (thanks to Sunshine!)
I think maybe the point that has been missed, is not that some patients with MS may have an additional b12 deficiency but that they have been misdiagnosed with MS when in fact they have a b12 deficiency.
I have been looking up the O bands that Sunshine mentioned, but although some references are made to the study, I can't find the study. However, what is clear is that it is very difficult - excluding the O band situation - for doctors to differentiate between b12 deficiency and MS.
I also understand what your research team are talking about in respect of intrinsic factor antibodies in respect of b12 absorption. However the major cause of b12 malabsorption is low stomach acid. This is a failing on the part of the parietal cells to release enough stomach acid. Murphy - one half of the Nobel Prize team that discovered the treatment for b12 deficiency, did much work in this region.
Very interesting to note however that recent research suggests MS patients are likely to be b12 deficient, although if you could link to the study showing the injections were not of benefit to them, I would much appreciate. Benefits are dependant on frequency and dosage - so the statement that they weren't of benefit means little until you know what the treatment was.
Also it would be helpful, not only to me but to the members, to link to the research that suggests b12 could actually make MS patients worse? I've never heard of this and I've read an awful lot of research papers today (thanks to Sunshine!)
30 Oct 2013 at 7:01PM
Hi Karen
I am going to ask a private GP to let me try the B12 theory - the blood tests wont work for me now due to 3 monthly injections and supplements.
What should I ask for
Injections every other day for 6 weeks and then weekly after that ??
or what would you recommend ?
Thanks Moyna xxx
I am going to ask a private GP to let me try the B12 theory - the blood tests wont work for me now due to 3 monthly injections and supplements.
What should I ask for
Injections every other day for 6 weeks and then weekly after that ??
or what would you recommend ?
Thanks Moyna xxx
30 Oct 2013 at 7:23PM
Oooh. I don't know now whether I can answer you or not? Or maybe I can and not use the b word.
I would think that after 6 weeks of every other day then you would know if there was going to be any improvement. After that time, you literally have to go by how you feel. I saw improvements within 2 hours. Most particularly with vision and clarity of thought.
Stuart, the whole point about my originally posting, was just to highlight the problems associated with 'the b word' (Ha, you nearly caught me out) Most doctors don't even think it makes you very ill. Many doctors think it is a placebo. Plus the standard treatment for it in the UK is amongst the worst in the developed world. These facts are why I linked to the film (which didn't go up) because they actually show a doctor with the illness, who didn't even recognise it in himself. And he was diagnosed (Originally) with a neurological illness of unknown cause.
If the medical professionals of today, don't know what it does, how can they (at the point of contact) be excluding it?
I would think that after 6 weeks of every other day then you would know if there was going to be any improvement. After that time, you literally have to go by how you feel. I saw improvements within 2 hours. Most particularly with vision and clarity of thought.
Stuart, the whole point about my originally posting, was just to highlight the problems associated with 'the b word' (Ha, you nearly caught me out) Most doctors don't even think it makes you very ill. Many doctors think it is a placebo. Plus the standard treatment for it in the UK is amongst the worst in the developed world. These facts are why I linked to the film (which didn't go up) because they actually show a doctor with the illness, who didn't even recognise it in himself. And he was diagnosed (Originally) with a neurological illness of unknown cause.
If the medical professionals of today, don't know what it does, how can they (at the point of contact) be excluding it?
Well Karen,
If you cannot find the study that referred to B12 and Oligoclonal Bands, try this
http://jnnp.bmj.com/content/71/suppl_2/ii9.full
Now that took me about 2 minutes to find.
There is one point that seems to have been missed in this discussion - the presence of Oligoclonal Bands in CSF is a very strong indicator of MS. Their absence does not prove that MS is not present.
Thus, the lack of OBs in the CSF does not - of itself - prove anything.
If you actually read Stuart's post about the large sample in Nottingham the only thing that you can take from what is actually a correlation, is that there is a link between MS on the one hand, and B12 deficiency and pernicious anemia on the other (strictly speaking that is a multiple correlation) and you should know that correlations do not have any directionality - so you do not actually know what causes what. If, that is, either causes the other.
With respect to mis-diagnosis, OK, you have made your point, but don't you think that maybe you should find another forum to promote your opinions?
Geoff
If you cannot find the study that referred to B12 and Oligoclonal Bands, try this
http://jnnp.bmj.com/content/71/suppl_2/ii9.full
Now that took me about 2 minutes to find.
There is one point that seems to have been missed in this discussion - the presence of Oligoclonal Bands in CSF is a very strong indicator of MS. Their absence does not prove that MS is not present.
Thus, the lack of OBs in the CSF does not - of itself - prove anything.
If you actually read Stuart's post about the large sample in Nottingham the only thing that you can take from what is actually a correlation, is that there is a link between MS on the one hand, and B12 deficiency and pernicious anemia on the other (strictly speaking that is a multiple correlation) and you should know that correlations do not have any directionality - so you do not actually know what causes what. If, that is, either causes the other.
With respect to mis-diagnosis, OK, you have made your point, but don't you think that maybe you should find another forum to promote your opinions?
Geoff
30 Oct 2013 at 10:07PM
This discussion as opened a new light to me as an undiagnosed
person. The MRI lesions in B12 defieciency I read tonight are on the
lateral and post lateral columm. I then went and checked my MRI report
and that is were mine are. In respect to Lumbar punctures go the Porf G
said on the Barts site the people with MS and clear LPs do not have true
MS.
Moyna xxx
Moyna xxx
30 Oct 2013 at 10:50PM
l think Karen has found the right forum - if it only helps one person - its a winner.
Hi Karen2,
I don't know of a single medical professional that wouldn't know about Pernicious Anaemia and its demyelinating effects. AND the fact that it is an absorption problem due to a loss of the intrinsic factor. Pernicious anaemia is a well recognised auto-immune disease.
And Drs routinely test accordingly for it when a possible MS diagnosis is in the offing. Indeed here in Australia at least, it is the very first test done in the 'rule out everything else' stage. And it isn't just a B12 serum level test. If it is found to be borderline low/normal or if nerve damage is evident on examination further tests are run to test the other parts of the blood chemistry to check for mal-absorption problems that are the cause of Pernicious Anaemia, specifically various antibodies that are present in the cases of an auto-immune disease which is what Pernicious Anaemia is.
Also B12 deficiency causes peripheral nerve damage as well as CNS damage and peripheral nerve damage is a big red flag to the diagnosis NOT being MS. Therefore someone presenting with this would be even more thoroughly screened for alternative diagnosis to MS.
Once B12 deficiency is ruled out THEN further investigations are done for a possible cause for neuro problems.
As regards to the OG bands it is important to realise a couple of things here. One is that OG bands are NOT diagnostic of MS. Many people can be Dx without them and further the presence of OG bands is not the issue, it is the presence in the CSF but NOT in the serum that makes it more of an indicator of MS. However in some cases of Pernicious Anaemia OG bands are found in both the serum AND CSF which again would be a red flag for it NOT being MS.
I don’t dispute that people may well have both conditions. Auto-immune conditions do tend to cluster together and if you have one you are more pre-disposed to having another one. And yes, people and their Drs do need to be aware of the possibility of having both diseases concurrently.
But to be claiming that most Drs are missing or are ignorant of this first step in diagnosing MS is taking it a bit too far. Especially when you then imply that loads of people are misdiagnosed as a result creating unnecessary fear and concern amongst people with MS. Not to mention the unnecessary cost people may now be tempted to incur as they rush off to self-medicate for something that may well not be necessary.
And this is for all the other people taking part in this thread…..
By all means ask your GP’s for a routine test for Pernicious Anaemia rather than just B12 Deficiency but tbh don’t be surprised if the request is met with scepticism because unless you are presenting with symptoms of the disease it is unlikely you will be treated for it! Believe it or not even your average GP will be well versed in the diagnosis and treatment of Pernicious Anaemia.
Cheers,
B
I don't know of a single medical professional that wouldn't know about Pernicious Anaemia and its demyelinating effects. AND the fact that it is an absorption problem due to a loss of the intrinsic factor. Pernicious anaemia is a well recognised auto-immune disease.
And Drs routinely test accordingly for it when a possible MS diagnosis is in the offing. Indeed here in Australia at least, it is the very first test done in the 'rule out everything else' stage. And it isn't just a B12 serum level test. If it is found to be borderline low/normal or if nerve damage is evident on examination further tests are run to test the other parts of the blood chemistry to check for mal-absorption problems that are the cause of Pernicious Anaemia, specifically various antibodies that are present in the cases of an auto-immune disease which is what Pernicious Anaemia is.
Also B12 deficiency causes peripheral nerve damage as well as CNS damage and peripheral nerve damage is a big red flag to the diagnosis NOT being MS. Therefore someone presenting with this would be even more thoroughly screened for alternative diagnosis to MS.
Once B12 deficiency is ruled out THEN further investigations are done for a possible cause for neuro problems.
As regards to the OG bands it is important to realise a couple of things here. One is that OG bands are NOT diagnostic of MS. Many people can be Dx without them and further the presence of OG bands is not the issue, it is the presence in the CSF but NOT in the serum that makes it more of an indicator of MS. However in some cases of Pernicious Anaemia OG bands are found in both the serum AND CSF which again would be a red flag for it NOT being MS.
I don’t dispute that people may well have both conditions. Auto-immune conditions do tend to cluster together and if you have one you are more pre-disposed to having another one. And yes, people and their Drs do need to be aware of the possibility of having both diseases concurrently.
But to be claiming that most Drs are missing or are ignorant of this first step in diagnosing MS is taking it a bit too far. Especially when you then imply that loads of people are misdiagnosed as a result creating unnecessary fear and concern amongst people with MS. Not to mention the unnecessary cost people may now be tempted to incur as they rush off to self-medicate for something that may well not be necessary.
And this is for all the other people taking part in this thread…..
By all means ask your GP’s for a routine test for Pernicious Anaemia rather than just B12 Deficiency but tbh don’t be surprised if the request is met with scepticism because unless you are presenting with symptoms of the disease it is unlikely you will be treated for it! Believe it or not even your average GP will be well versed in the diagnosis and treatment of Pernicious Anaemia.
Cheers,
B
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