Mistymaud

There is no specialist in Shetland - there is no specialist in Scotland. There are no guidelines for treating it in Scotland. The problem is that non of the haematologists, neurologists, GPs understand anything about it. Seriously. That's why I put the link up in the first place. I spoke to a consultant who gave me a lovely lecture on subacute degeneration of the spinal cord - but he didn't know what the symptoms were.... Serious damage from b12 deficiency is something they think they never see - but they rarely test for it - and if they do they just test serum b12 levels. Anything will put those right. You can eat 2oz liver and it will put your serum levels right. It means nothing. My concern in respect of this thread is that if this very common illness is constantly being missed because patient's are 'headed off' at the first hurdle - what else is being missed? It can't just be b12 deficiency. Where are the common denominators being picked up? They aren't. What happens if patients phone up to say they have a problem - they get put through to someone who confidently explains they are 'not a clinician.' Soooooo, why are they in the job? Why is a patient's first point of contact when it comes to health care concerns, an admin bod? The answer actually is obvious: because these people are put in place to deflect attack (and they do consider a complaint an attack) that's all they are there for. They are not there to get to the root cause of the problem. They aren't listening, they are in protection mode. And they will do what they need to do to meet their objective. Make no mistake, I have no respect for these people whatsoever - the only comfort I get is in knowing that b12 deficiency affects about 1 in 3 people. It probably contributes to the demise of these people in numerous ways: heart attack, stroke, some cancers, and the neurological degenerative conditions. So, the fool that is following orders and deflecting resolution of the problem, has a reasonable chance of dying from the condition themselves.

I get very concerned when reading threads like this - and probably, these days for different reasons than I used to. I was the person who posted the b12 Deficiency Can Kill thread. And, as you may suspect, I have first hand experience of this illness. I also have experience of challenging the authorities and medical professionals in respect of it. But what I've recently come to realise is that all this gagging and absention from responsibility (professional or legal) and letting the pen-pushers have control of the situation, has essentially ensured that medical knowledge is being erroded. The b12 situation is a beautiful example: We have an illness that is well known historically to be fatal. We now suspect that as many as 1/3rd of the population suffer from it. It manifests itself in different ways and most patients that have a serious deficiency aren't even tested for it - the are diagnosed with one of the more 'well known' illness ie dementia. There are patients all over the world, that have for many decades, reported back to doctors that their symptoms reduce when given more b12. I can speak to nurses I know personally who tell me this all the time. But patients aren't heard. And, if like me, you find out that your illness was the root cause of your problems the pen-pushers and legal bods step in to cover it up - to trivialise it. Hence, the medical professionals who need to know what is going on, never get to know - or they fear their reputation being tarnished. When it comes to medicine the truth should never be hidden. Medical developments can not be made without the truth - and, as in the case of b12, knowledge is actually deterioriating to the point where most doctors simple give patients a patronising half-grin when discussing it. One hundred years ago this was one of the most feared illnesses.... Is island life worse with regards to this? I would say, most certainly, yes. Everyone knows everyone else, the patients who are considering complaining have limited access to alternative health care (they can't drive 100 miles to a drop-in centre) so they put their health at risk, and it's easier for smaller regions to restrict information through such acts as the Freedom of Information.

I thought I'd put another link up for you because this one actually shows patients in the 1920s and gives some idea of how physical symptoms can progress. This film is genuine, it's a silent movie so don't expect special effects! It is believed to be the film that was shown to the audience when Murphy and Minot won the Nobel prize for discovering the treatment. It also shows patients eating raw liver - those of with a nervous stomach are forewarned. It doesn't show how mental function is impaired or degenerates. I believe the male patient in the film took many months to walk again, but he did and he eventually returned to some kind of employment - but it can take a long time. ... And to those that have given me a 'thank you' - thank you. http://bloodjournal.hematologylibrary.org/content/107/12/4970.1/suppl/DC1

JustMe. If you watch the film again, and I don't know what medications you are on, but some can make a b12 deficiency worse. Metformin for one. Antacids are another. When it comes to the RDA, again, as the film shows, the RDAs are completely ineffective for someone who is suffering a malabsorption problem. Silvercloud. You are absolutely correct. What doctors are trained to look for is anaemia - and you don't need to have the anaemia symptom to be ill. The sad thing is that this fact is not news it's ancient history. J Risien Russell reported this back in 1900 in a study he did on patients (all of whom died because there was no treatment at that time.) In fact, the photo that you see in the film at the start, the one of the fat arm and then the thin arm, was taken from his study. This is what he said when it came to diagnosing the illness "A diagnosis of pernicious anaemia arrived at from the character of the blood elements alone is quite unjustifiable." He actually objected to calling it pernicious anaemia because he knew the anaemia didn't have to be present but the name remained so as not to confuse it with other forms of anaemia. Modern doctors however, have been taught the anaemia has to present for a patient to be ill and to get a confirmed diagnosis. Most doctors are completely unaware of what b12 deficiency does. Most doctors, once serum b12 levels are back into the normal range, will consider a patient treated. Any remaining symptoms will be put down to another illness (and a barrowload of tests to find out what it is - but they don't because it's the b12) or they will be treated as emotional hysterics and sent off packing with platitudes. It has to be the hardest thing to come to terms with - sitting in front of 21st century doctors and knowing they haven't got a clue what they are talking about. It's both sad and frightening. There is no definitive test because no serious work has been done on it. They list the tests in the film but all of them can revert to normal once supplementation takes place. They are all blood tests. The only way round it, is to treat aggressively and see if symptoms diminish. In many cases, depending on how severe the deficiency is and how long it's gone on for, some symptoms remain. It is even questionable as to how effective an MRI is after several months treatment. It appears that even in patients that before treatment had MRI indicating damage, after treatment, the damage doesn't show on the MRI. Yet some of the patients that entered the study were crippled both before and after treatment (even though some improvements had taken place) There are so many unanswered and unanswerable questions - so we have to go back to basics - back to what Murphy and Minot did. Treat it aggressively and see how far a patient improves.

I've put this link up on another forum and thought it would also be useful to the people on here. It's an interactive symptom checker designed by a Dr in the UK who has fought for many years to highlight the problems of b12 deficiency. If there are people out there with any issues that could be considered neurological or to do with malabsorption, then it might be worthwhile having a look at it. And by neurological I don't specifically mean 'mental health problems.' It's anything to do with memory loss, mood change, fatigue, physical deterioration - and a multitude of other problems that might seem like very little until you put them all together. http://b12d.net/content/B12-signs-symptoms-assessment-form

By 'eck - you're quick on the uptake, aren't you!!!! I'm impressed!!!!! My main concern regarding MS is a common-sense one. We have 100s of MS specialists - we have NO B12 specialist. None. In the UK. How can someone be a specialist in one disease that produces exactly the same symptoms as another disease, without knowing anything about the 2nd disease. You cannot diagnose one until you rule out the other. Yes, there must be many, many cases of misdiagnosed MS. Personally I believe there are also links between Vit d def and b12. This is down to personal research and nothing else, so I'm not really going there. What I will say is, if you are low on vit d, have your b12 checked as well. The problem with testing is that if you supplement even minute amounts, the serum b12 will return to normal. And by supplement, that can mean eating a small piece of liver each day. Two things that I've learned from the historical research: 1) Blood test results are not a diagnosis of b12 deficiency, they are purely one of the symptoms and the easiest to rectify. 2) Once treatment commences (by supplementation or whatever) all bloods return to normal. This does not mean the patient is 'cured' it means one of the symptoms has been resolved. You can still be dying. Your medical professionals do know - at least at higher levels and your government knows.

It is now known that b12 deficiency could affect 1/3rd of the population. It has been known for nearly 200 years that this illness ultimately causes death, but prior causes psychiatric problems, paralysis, dementia, vision issues and a plethora of other neurological problems. Hardly surprising since b12 is necessary for the production of myelin which protects nerves and brains. Unfortunately, in modern society, most medical professions treat b12 deficiency as something trival - the knowledge of it is lost. In Scotland there are no medical guidelines for treating this illness - indeed, even if you present with typical symptoms it's rare you will be tested for it. Even if you are, and you are deficient, on many occasions patients are only given treatment suitable for vegans. This treatment will raise b12 levels in the blood and the doctor will pronounce you treated - but it only raises levels in the blood, it does nothing to stop or repair the damage at cellular level. If you know someone who has emotional issues, for example seems very anxious, or someone who has dementia, or someone who has MS, or someone who has a child with autism - then these could in fact be b12 deficiency. Yet it is highly unlikely the patients have even heard mention of it. Their doctors will not even give it serious consideration. I'm including a link to a documentary video quite recently released on Youtube and I hope I'm not contravening any rules. This video gives 4 examples of patients who were close to death before the cause was revealed to be b12 deficiency. It includes a doctor - complete in his diaper with his feeding tube - he's a brave man to come out and say he was ignorant of the cause too. Try and forget everything you thought you knew about b12 and remember that in Scotland there are no guidelines for treating this illness. It's not considered important enough.

I had, sort of, heard of that. Somebody told me that if you sold a house because somebody approached you, then you didn't need a home report. But I think it's the terminology that's throwing me. A Home Report in itself includes the single survey, the EPC and the Seller's questionnaire (at least I think it does!) Plus, just to confuse matters further, it also includes a generic valuation and you can have the Home Report done without this which makes it slightly cheaper. The survey in Scotland has to be done by a RICS registered 'residential' surveyor (not just any old one) and the EPC by an assessor. Trouble is, if I wanted a Home Report done on my property and it was in Edinburgh (phoned a RICS recommended surveyor) it's £300, out here it comes in at anything between £500-£760. Not helped I suppose by the average pricings given on the Scottish Gov website. Bottom line is, it's a real stinger!!!!

Hi, I'm new here and just popped in from Orkney to ask about the costs of your home report surveys when I found this thread. It seems some of it may have been answered by the quote from Taits, more or less the same price here too although the cost of a home report in Edinburgh is half the price and I'm a bit unsure as to why. I've also noted Becky's comment about the private sale thing but don't know how that fits in. If you have to have a home report then you just have to get a surveyor out and they never asked me whether I was marketing it privately or not? I'll google it Becky and see what I can come up with! You have a very nice, informative forum here by the way!