Your ideas

There are thousands and thousands throughout the country who suffer from this illness. Our GP’s know little about it at all, getting the correct treatment is a nightmare. I am self injecting 3 times a week at home as my GP’s Nurses do not have enough time to spare 3 appointments a week. Varying degrees from the basic feeling ill and worse between injections to (as in my case) dementia like symptoms, can affect your legs & feet so a number end up in wheelchairs. Not recognised as what it is, many are misdiagnosed. Thousands of people out there are not even diagnosed, leading to depression, falls, wooly headed, sleeping enough to miss whole days and becoming a recluse as you never know how you are going to be on a certain day, people give up on you, don’t believe you. The Government must alter guidelines which are out of date, take note of how serious this is and the many thousands of adults & children suffering badly. Pernicious Anaemia/B12 Deficiency is a frightening and horrible illness, it does not get better, just bearable, it is for life. We need more clout behind us to get someone in the Government to take notice and do something, for Neurologists even to recognise this. In my case the reply to my GP for an appointment came back as not really interested, if you really do insist I will see her! I thought Neurology was my last hope before the dementia type symptoms take hold and my brain becomes permanently damaged as has happened to others. The numbers even in our Surgery are growing fast (as told by a Nurse) this is a crisis situation which must be helped before things go so far that for many, many sufferers it is too late and they are in a wheelchair, damaged brain by dementia, as with Diabetes feet & legs affected. If you say “I have Diabetes” people recognise the term and sympathise, if I say I have B12 deficiency and slept all day yesterday missing my appointments, you are not believed. This is a cry for help by just one of the Pernicious Anaemia Society of nearly 9,000 members, and the thousands of others quietly hiding and suffering in silence as we have no voice. When we try to have a voice no one listens, no one cares. Help from Which members to push forward in any way would be so very much appreciated. I simply cannot go on as I am. Thank you, MarcieCB