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What can you do if no-one knows what's wrong with you? watch

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    I just don't know what to do anymore. I've been unwell for six weeks now and am getting no better. I've seen multiple doctors and got refered to the hospital. Due to this illness I have had to leave my job and take a leave of absence from uni which has really upset me, to the point I feel all my mental health problems are coming back on top of everything.

    No doctor seems to know what is wrong with me. My blood tests are showing nothing apart from low b12 which they are doing nothing about. For the first two weeks they told me I had a UTI so put me on antibiotics but turns out I didn't have anything like that.

    I'm getting extremely depressed. I can't do anything or go out without feeling ill. I've practically been lying in bed now for six weeks. What bothers me is that I don't think doctors are taking me seriously. My last doctor asked how I was and I said not very good, as to which he said oh well you look fine!

    It would just be nice if someone could tell me what was wrong, instead of me not knowing when I'm going to get better. It honestly feels like I never will. I worry about the state of my mental health the longer this goes on.

    I don't know what I'm asking really. How do I get my doctors to listen to me more? I feel like I'm getting fobbed off, by my gp and the hospital, even though this is really ruining my life at the minute. My mum is really frustrated and rang up the hospital, got a little aggressive. That's not the approach I like to take really.

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    To be fair, low b12 is something you can treat yourself via supplement or dietary changes. What doesn't make sense is that you say you have all these symptoms and yet these doctors don't seem to be able to find much of anything wrong with you. If you are as ill as you are suggesting then I would assume that they would be able to diagnose your condition...

    Btw, I think one of the worst things you can do when you are ill is stay in bed for weeks at a time. You need to start getting up, going outside for some air, eating really well, etc.
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    (Original post by Doc.Daneeka)
    To be fair, low b12 is something you can treat yourself via supplement or dietary changes. What doesn't make sense is that you say you have all these symptoms and yet these doctors don't seem to be able to find much of anything wrong with you. If you are as ill as you are suggesting then I would assume that they would be able to diagnose your condition...

    Btw, I think one of the worst things you can do when you are ill is stay in bed for weeks at a time. You need to start getting up, going outside for some air, eating really well, etc.
    Yeah the thing is though I took 1000mg capsules for six months and nothing changed, so they said there may be something stopping my absorption, yet nothing was found, so injections were mentioned but never acted on.

    I know it's bad to stay in bed. I haven't 100% been in bed. I've tried to walk to the shop, go to a cafe for a drink and stuff but I'm barely able to and it's not very pleasant. Last night I forced myself to the cinema which is the longest I've been out since getting ill, and I felt awful. Felt worse than I had done all night. I can't help but feel that wouldn't have been the case if I hadn't forced myself out.

    I dunno. Losing hope a bit because as you say you would think someone could tell me what was wrong. I just find it very frustrating. Thanks for your reply.

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    Well, when I say get out of bed I mean go outside (like a park) for fresh air more than going to indoor places in particular. Someone that used to live across from me swore by fruit teas, e.g., green tea, and light exercise to help get over her flu and while I couldn't personally go for a run when I was unwell, I did benefit from going out for a walk.
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    Sorry to hear about your woes Airfairy, sounds like you're in a tricky position.

    As a medic myself I can empathize that it is difficult to diagnoses something that can't be found and there is no sign of. Quite often it simply becomes an exercise of exclusion where all medicine can do is tell you that it isn't A, B or C. This is by no means a rare occurrence and quite often there simply is no detectable organic cause for an illness. It is extremely unlikely that all your doctors are missing the same thing, and it may be the case that there simply isn't anything to detect. This of course is of little comfort to yourself, but we do sadly have to live with the limitations of medical knowledge and skill sometimes.

    Obviously you're in a lot of distress over this so it's important to express your symptoms exactly and how it is impacting your daily life. I've no idea what your consultations with your doctors have been like, but without really getting across how disabling your symptoms are, they may just think you're happy to know it isn't anything obviously serious. So really try and get across the social impact your symptoms are having.

    Quite often a doctor is left with the unsavoury choice of believing it is something incredibly rare which requires very specialist knowledge, or making a diagnosis of psycogenic illness. My hunch would be that these are both diagnoses they are trying to avoid making, at the expense of not giving your an answer at all, but sometimes can be the only option by medicalising the fact that we simply don't know.

    It definitely sounds like both you and your medical team are in a tough spot right now. But don't lose hope, there are lots of medical specialties, one of which may hold the answer. There is also the beauty of your own body, and your illness may well go of its own accord in the near future.

    All the best.
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    Hello,
    I know I'm a bit late on this one, but I did put a link in the Chat thread relating to low b12. This is it.
    https://www.youtube.com/watch?v=BvEizypoyO0

    Please watch it as it may answer a lot of your questions.

    The b12 you have been taking may not work for several reasons. If you have a malabsorption problem (which simply by having low b12 levels would be indicated) then you will only absorb 1% via passive diffusion.
    Oral tabs don't work for some people at all.
    It also depends on the kind of cobalamin (b12) that they are. Cyanocobalamin, hydroxocobalamin or methylcobalamin.
    Methyl is the most effective, cyano the least.

    You could also try getting an VEGF salivary test - which you will have to pay for privately. This will establish if you have low stomach acid which would confirm malabsorption but which is rarely done on the NHS.

    I'm presuming you have already had instrinsic factor antibody tests and parietal cell anti body tests.

    I know the video is long but sit it out. It isn't primarily about vegetarianism but because of the dietry issue they obviously do take up some time.

    If you look up my posting on b12 in the Chat thread you will see what has happened historically regarding the loss of knowledge of b12 deficiency and how doctors have little understanding of it.
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    To save time I've found the original posting that I made. I've taken out the link to the film because you've already got it.
    If you look at all the postings on here on b12 and people are asking for help and saying their doctors aren't apparently taking it seriously, you can now learn why:

    B12 Deficiency or MS? - Both can Kill
    In the 1930s the American scientists Murphy and Minot won not only the Nobel Prize for discovering a treatment for Pernicious Anaemia (B12 deficiency) but were also honoured with the Cameron Prize from Edinburgh University.

    Prior to 1926 when M&M discovered the treatment (but not WHY it worked) PA was a death sentence.

    Film of their treatment and patients can still be found on the internet today.

    Back then it was known as Pernicious Anaemia because they knew that one of the possible symptoms was anaemia - however, even as far back as 1900 J Riesen Russell made clear that the anaemia was only a possible symptom and a diagnosis should not be reliant on it.
    Murphy and Minot proved that with their treatment the anaemia was resolved quickly and easily - in a matter of days - but that the neurological damage remained for much longer and in many cases did not resolve completely.

    In 1948 the molecule contained within Murphy and Minot's treatment was isolated and called Vitamin b12.

    It was also confirmed that the anaemia did not need to be present for a diagnosis to be made.

    Yet how many modern day medical professionals know this?
    How many doctors know what b12 deficiency does - that it is a demyelinating illness and death is a certainty unless it is treated correctly?
    How many doctors know the neurological signs of b12 deficiency?
    How many doctors know the neurological signs are the same as those of MS?
    How many doctors know that unless it is treated correctly (and for suspected neurological implications that is every other day injections till symptoms stop improving (BNF Guidelines)) all that will be rectified is blood levels and the neurological damage will continue to ravage the body?
    How many doctors and scientists overlook b12 because of what they don't know and continue to try and find a cause of suspected MS or dementia or some other neurological illness of unknown cause?

    Here is a link to a documentary posted on Youtube earlier this year. One of the patients is a GP who is shown in his nappy complete with feeding tube - he had b12 deficiency and never even suspected it himself.

    Don't let the knowledge that Murphy and Minot and the great minds who were once revered, die.
    Watch, learn and even in the face of certainty always have an enquiring mind.

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    10 weeks isn't really that long, tbh.

    Are you keeping a diary of your symptoms?
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    (Original post by Kayteetoo)
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    I've read all your b12 info, but I don't really know what to say! My latest blood test results came back just over the normal limit for it (200), so now they won't give me injections or anything. I've been tested for intrinsic factor and stuff like you said. I was reading somewhere that low b12 leads to dementia if untreated for long enough, and here they only treat it below 200, in Japan they treat people below 500 and have dramatically lower rates of dementia! Pretty bad.

    (Original post by OU Student)
    10 weeks isn't really that long, tbh.

    Are you keeping a diary of your symptoms?
    Well virus symptoms normally go in like a week, so when it stays that long it's nice to know why, since I had to quit my job and stuff.

    Anyway, I am keeping a diary now, mainly for my stomach problems. I have an appointment on Tuesday about them but I think they think it might be crohns now so dunno.
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    The reason Japan have a higher lower end range is that they realise the serum b12 test is unreliable.
    In the UK we treat the figures on the serum b12 as if it is the be all and end all.
    If you've also been supplementing, this will raise the serum b12 level.

    I am so sorry to tell you that it is highly unlikely you will get any help with this from medical professionals. They really do not understand this illness and misdiagnose on a regular basis.

    I don't know if you've watched the film but that explains a lot, particularly why the serum b12 should not be relied upon for a diagnosis.
    Physical symptoms are actually more important than the bloods.

    I'll put another link in to an automatic symptom checker - and you can see for yourself if your symptoms match up.
    I saw you mention earlier than your mum is a bit of a spitfire because they aren't taking you seriously. Show her this stuff. I'm a bit of a spitfire myself and it saved my life - your mum might just save yours!

    http://b12d.net/content/B12-signs-sy...ssessment-form
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    And just an extra bit of information for your mum!

    You have already had your diagnosis.
    You were diagnosed with a b12 deficiency and you were symptomatic.
    If those symptoms implied even 'suspected neurological involvement' then the British National Formulary guidelines state that you should be given every other day injections until no further improvement.
    They do not even say that your injections should be stopped just because serum b12 levels go into the normal range.

    There has already been a possible failure in care here. Simply because doctors don't bother anymore to read the guidelines because they 'believe' they know something, does not absolve them from responsibility of keeping up to date with procedures.

    You can actually join the British National Formulary on line and check for yourself.

    And also bear in mind that 'neurological' does not mean a 'mental' or 'emotional' issue - it means anything that deals with the nervous system - and nerves control everything in the body.
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    (Original post by Kayteetoo)
    And just an extra bit of information for your mum!

    You have already had your diagnosis.
    You were diagnosed with a b12 deficiency and you were symptomatic.
    If those symptoms implied even 'suspected neurological involvement' then the British National Formulary guidelines state that you should be given every other day injections until no further improvement.
    They do not even say that your injections should be stopped just because serum b12 levels go into the normal range.

    There has already been a possible failure in care here. Simply because doctors don't bother anymore to read the guidelines because they 'believe' they know something, does not absolve them from responsibility of keeping up to date with procedures.

    You can actually join the British National Formulary on line and check for yourself.

    And also bear in mind that 'neurological' does not mean a 'mental' or 'emotional' issue - it means anything that deals with the nervous system - and nerves control everything in the body.
    Thanks for the info. It has annoyed me a lot, I've had several doctors telling me things like 'oh you'll probably be looking at injections' but no-one tells me anything else. I dunno if what I have now is actually linked to b12, but I'll be pissed off if it is. I got 45 on that test thing you put a link to.

    Out of curiosity, how do you know so much about all this b12 stuff?
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    If you can at least get a course of the initial loading doses then you may see some kind of improvement and it may convince you, if not the medics, that this is the problem.
    But, usually with this illness you have a weird kind of low mood, you find it difficult to be assertive, so it's really better if someone else can look at the information and fight on your behalf.
    After all, it's only a vitamin - what have you got to lose by pushing for it?
    It's not going to cause you more harm, and you can have it while you're waiting for whatever referrals or tests they want to send you for.

    How do I know about it?
    I was ill. I had blood tests. They said there was nothing wrong with me. Every symptom I had they put down to being psychological - to the point of ridiculous. My hair was falling out, I was losing my sight, I couldn't lift my arms up, I was falling over, I was bruising all the time.
    Turns out my very low b12 had been identified one of the first times I went to the doc. But nobody did anything about it.
    Even then, when it was picked up much, much later, they still did next to nothing. I researched, treated myself and reversed the problem.
    No, I'm not right, but I'm not dead either. Which is good.
    Long term damage results in axonal death - the nerves die - so picking up on it early is very important.

    I'm truly amazed at how many people on here appear to be very symptomatic and b12 is not being identified or treated appropriately when it is.

    You can give b12 simply to see what happens. It's not toxic, you can't overdose and it's cheap - what have the medical profession got to lose?
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    (Original post by Kayteetoo)
    If you can at least get a course of the initial loading doses then you may see some kind of improvement and it may convince you, if not the medics, that this is the problem.
    But, usually with this illness you have a weird kind of low mood, you find it difficult to be assertive, so it's really better if someone else can look at the information and fight on your behalf.
    After all, it's only a vitamin - what have you got to lose by pushing for it?
    It's not going to cause you more harm, and you can have it while you're waiting for whatever referrals or tests they want to send you for.

    How do I know about it?
    I was ill. I had blood tests. They said there was nothing wrong with me. Every symptom I had they put down to being psychological - to the point of ridiculous. My hair was falling out, I was losing my sight, I couldn't lift my arms up, I was falling over, I was bruising all the time.
    Turns out my very low b12 had been identified one of the first times I went to the doc. But nobody did anything about it.
    Even then, when it was picked up much, much later, they still did next to nothing. I researched, treated myself and reversed the problem.
    No, I'm not right, but I'm not dead either. Which is good.
    Long term damage results in axonal death - the nerves die - so picking up on it early is very important.

    I'm truly amazed at how many people on here appear to be very symptomatic and b12 is not being identified or treated appropriately when it is.

    You can give b12 simply to see what happens. It's not toxic, you can't overdose and it's cheap - what have the medical profession got to lose?
    Wow. I'm glad you finally got some treatment for it. It's very annoying! I don't understand why they don't just give it people at least one just to see if it makes a difference. I've also read it's really cheap.
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    They don't treat it because they really have lost the knowledge of what it does. It really is a lethal illness.
    The other problem is that because it affects the nervous system (it causes demylination) it can rear its head in a multitude of different ways.
    However, what everyone seems to get to one degree or another, is the low, weird, foggy moods.
    You can't call it depression, although most professionals would try. But it causes anxiety, fearfulness, negativity, lack of confidention, lack of concentration. It's really very strange.
    I was a very, very, confident individual and had never suffered from depression and for 2 years prior to going to the docs I was starting to think "What the hell is wrong with my frame of mind...!"

    It is cheap. You can buy the injections over the counter in Europe and they are less than 3 euro for 6 shots.
    You cannot buy them in the UK.
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    (Original post by Kayteetoo)
    They don't treat it because they really have lost the knowledge of what it does. It really is a lethal illness.
    The other problem is that because it affects the nervous system (it causes demylination) it can rear its head in a multitude of different ways.
    However, what everyone seems to get to one degree or another, is the low, weird, foggy moods.
    You can't call it depression, although most professionals would try. But it causes anxiety, fearfulness, negativity, lack of confidention, lack of concentration. It's really very strange.
    I was a very, very, confident individual and had never suffered from depression and for 2 years prior to going to the docs I was starting to think "What the hell is wrong with my frame of mind...!"

    It is cheap. You can buy the injections over the counter in Europe and they are less than 3 euro for 6 shots.
    You cannot buy them in the UK.
    Weird you say about the moods. I have been labelled as having depression and anxiety. I get pretty much everything you say, and when they first told me about my low b12, I thought "great! That explains my moods", because I'd read about it being a cause of weird moods, yet it doesn't make a difference if I can't get it treated Gahh
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    Although it does push your serum b12 levels up (which convinces medics you are 'treated') it's a shame the tablets did not work for you. If you can get 1,000mcg methylcobalamin they tend to be the most effective for most people if they are going to work.
    Long term it's not an ideal solution in most cases, but short term it may help you.
    Cyanocobalamin tablets never worked for me at all, but methyl did used to work - although they don't now which is a great disappointment.

    A ridiculous situation though - that you have indications of knowing what is wrong with you but the medics won't acknowledge that it even causes problems.
    You can only label it 'ignorance' for a certain period of time. Okay, they are ignorant because they aren't trained properly, fair enough. But after a certain amount of time that ignorance finally becomes arrogance. They are surely in a better position than most patients to educate themselves - and they should be doing exactly that.
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    (Original post by Kayteetoo)
    Although it does push your serum b12 levels up (which convinces medics you are 'treated') it's a shame the tablets did not work for you. If you can get 1,000mcg methylcobalamin they tend to be the most effective for most people if they are going to work.
    Long term it's not an ideal solution in most cases, but short term it may help you.
    Cyanocobalamin tablets never worked for me at all, but methyl did used to work - although they don't now which is a great disappointment.

    A ridiculous situation though - that you have indications of knowing what is wrong with you but the medics won't acknowledge that it even causes problems.
    You can only label it 'ignorance' for a certain period of time. Okay, they are ignorant because they aren't trained properly, fair enough. But after a certain amount of time that ignorance finally becomes arrogance. They are surely in a better position than most patients to educate themselves - and they should be doing exactly that.
    Where would I get something like that from? I bought mine from Holland and Barrett, 1000mcg slow release ones. They were the most expensive there, the rest were smaller doses. I gave them chance for like six months but felt no different :/
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    Do a search on the net but when you find them try and look for methylcobalamin as the type of b12 - this doesn't need converting in the body. There are lozenges available also.
    I don't know what the other type you took were although it could be that oral supplements don't work for you.
    I know you are having other tests and some of these illnesses are linked. You willl have to see how the tests turn out.

    I would though be inclined to try and get a bit of back up from mum, and although your b12 test is into the normal range now, point out that they didn't treat you when it was deficient and that your supplementing may well have pushed the levels up without treating your symptoms. They mentioned the jabs and you should have been given them automatically at the time.
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    (Original post by Kayteetoo)
    Do a search on the net but when you find them try and look for methylcobalamin as the type of b12 - this doesn't need converting in the body. There are lozenges available also.
    I don't know what the other type you took were although it could be that oral supplements don't work for you.
    I know you are having other tests and some of these illnesses are linked. You willl have to see how the tests turn out.

    I would though be inclined to try and get a bit of back up from mum, and although your b12 test is into the normal range now, point out that they didn't treat you when it was deficient and that your supplementing may well have pushed the levels up without treating your symptoms. They mentioned the jabs and you should have been given them automatically at the time.
    I've had a search on the internet and it does seem those ones work when cyano doesn't. I just checked my supplements - they were cyano ones. Going to order some, but there's a health store near my uni so I'm going to check in there first and if not I'll order some tomorrow. I can't only find them in America so they will take a while to come
 
 
 
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