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Written by a patient
11th November 2015


I lived in Orkney and had an extremely healthy lifestyle. After suffering increasing muscle weakness particularly in my arms and legs, I then developed a severe weakness in my neck. I was told by my GP that blood tests revealed only a D3 deficiency. Over the next year my physical problems increased to the point I found it difficult to walk. My vision deteriorated from 20/20 to not being able to distinguish cows from horses at a distance of 100 metres. My GP consistently told me I was not ill and refused further referral. I then asked to see my own blood test results and found, from 11 months previously, a significantly deficient B12 result. My GP refused me loading doses and prescribed 1 x 50mcg tablet per day which is contra-indicated for patients other than vegans. It is unsafe and would have had no other effect than raising my B12 levels and masking the cause. He refused to refer me to a consultant to assess the neurological injury. He refused to sign a sick-note, as he had done throughout my previous attendance, so I could claim benefits. He thought working would be 'better for me.' I contacted the hospital and spoke to Dr Siderfin asking for help. I was asked if my B12 levels were normal now. Which they were because I had been forced to self-medicate. I was told that I should now be okay and that I 'sounded' all right. I will make clear that at this point I was desperate for professional intervention and assistance. Although I had suffered terribly during the previous 11 months, this was the start of the 'real' nightmare. The one where I eventually discovered I was talking with clinicians at cross purposes. The one where I discovered they thought B12 deficiency was an easily treatable blood condition and that I was a 'complainer' or a 'whiner.' The one where, because I was expected to function normally and I struggled to do so, I lost my home and my reputation. The one where I knew that an untreated B12 deficiency could cause permanent neurological injury but the clinicians I was talking to, did not. The one where, because of their ignorance and refusal to update skills and knowledge, my GP was allowed to cover up his mistake and the severity of it. The one where clinicians I saw constantly looked at my B12 levels and said 'they are normal now' and put my physical deterioration down to being 'cognitive' or 'functional.' This is the latest guidance on B12 deficiency from the BMJ: "Vitamin B12 deficiency can cause devastating neurological disease ...... Early diagnosis and prompt treatment may reverse neurological disease. Unfortunately, many cases are irreversible and clinical disease may not respond to adequate therapy. Early diagnosis in the near-asymptomatic stage can be critical in preventing permanent neurological damage.' Neuro damage AND/OR anaemia. You do not need anaemia to be seriously ill and to suffer neurological injury. I did not get an early diagnosis. I got an extremely late diagnosis (which I found) and after neurological symptoms had become extreme. I received no help and only offers of inadequate treatment. This is the clinical review which kicked off the revisions to B12 guidance http://www.bmj.com/content/349/bmj.g5226/rapid-responses I expect my case to be revised in light of the 'recent' findings relative to B12 deficiency.

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