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I have suffered B12/Pernicious Anaemia for just over 10 years. For 9 months I had awfull mouth ulcers, felt so weak and tired but treated with every throat/mouth infection remedy made. Asking for a second opinion I was from there sent to Maxiofacial at the local hospital. The doctor took a quick look at my ulcers, couple of questions and immediately ordered a blood test for B12. A few days later my GP rang me in the evening to say I was to go to the surgery next morning and start injections for B12 deficiency, the Nurse would explain what it was (he did not know, nor did the Nurses), I would have them for the rest of my life. Government Guidelines being injection 12 weekly (UK gives injections a third of those in other countries) by the time 12 weeks passed I felt so incredibly ill could barely get out of bed. Having read an article in a magazine, I took this to my GP and kept on until 8 weekly. I moved 6 years ago, and using the same article and that of articles and links to the Pernicious Anaemia Society my now GP down to 6 weekly. The first week takes approx 6 days to take effect, I usually have 1 day when sudden long sleep happens. Followed by approx 3 weeks when I can manage to make the bed again, clean round the house and go out, make my appointment times. Last 2 weeks gradually feel more and more ill, so tired, my body does not want to operate. For the last 4 years I have developed Dementia type symptoms progressing to falls, forget names, addresses, cannot find the right words when filling out forms, writing letters, e mails etc. I keep a dictionary beside me to look up similar words to make sense. I have very long sleeps when I do not hear the phone, door knocking, door bell. Thus losing whole days. At Christmas I had a brain scan which showed no Dementia proper as it were. The Psychiatrist was very good and as requested looked thoroughly at PA, read the links I sent. He came to see me, although he would not see me in future as I did not have Dementia, he strongly backed my need for a Neurosurgeon and more suitable treatment for that of the type of Dementia caused by PA. This being injections every other day until such a time as my memory problems are back as they should be. I have felt so very ill between injections, days when I cannot even remember what I did earlier that day, forget so many appts., names, words. Still have falls out of the blue, send friends cards or presents to my own address, it is not until a month or so later when I find I have done these type of things. My GP has finally agreed to giving me two weeks of 3 injections per week (the loading dose when first diagnosed). An expert from the PA Society kindly had a consultation with my GP, explained more frequent injections with no "date" specifically to end, being dependant upon improvements. Despite this consultation all I have is this loading dose, I have bombarded my GP and Consultants for Gastro, Arthritis etc with more information, book details, links, copies of research yet still cannot get the treatment necessary. It is very clear in all the information sent that if left too late the damage to the brain is irreversible. I wonder if as the Government Guidelines are so out dated, probably not giving GP's either correct information or funding to help. GP's do not seem to have any depth of knowledge, patients are then misdiagnosed with ME, Dementias, and numerous other conditions. There is no requirement for at least one GP per surgery to have a decent knowledge of this condition, I assume that with such bad Government Guidelines that local Trusts are not funding correct treatment, GP's left without guidance or funding, especially as barely any GP has a grasp on this, have their hands tied. I would be interested to hear if anyone has had more success than myself, and if so can I borrow their GP. My GP did write to a Neurologist at our hospital, who replied that basically he wasn't interested but if my GP insisted he would see me! Even a Neurologist by the sound of it does not want to know, sounding to me as if has no proper knowledge of the condition anyway. This is such a horrible, serious illness being suffered by an increasing number of people throughout the UK. I really am worried sick that treatment, if at all, will be too late. To be constantly ill, asleep, barely able to get out of bed and forgetting /doing ridiculous things, I rarely go anywhere now, sure people don't believe this constant being poorly, my family do not feeling I have lost control of my life and trying to make excuses. I am at the lowest ebb, depressed - the stress the cause of nose bleeds apparently, which I have never suffered. You tend to think that no one believes all these things and perhaps it is all your fault, you are imagining everything, self worth gone. There are any thousands of PA/B12 sufferers now, more being diagnosed daily, yet once injections under the Guidelines are given I feel GP's happily wash their hands of you and put you in a "sorted, no further treatment necessary" box. Any suggestions most welcome, it is so good to know others suffer the same problems and share the fact that it is not just you, you really are not completely imagining your symptoms, making it up, not mad after all.On a similar tack as it may be caused by PA or not - I suffer also with Plantar Faciitis. For some months I am finding my feet, always cold, seem to be numb with no feeling underneath. I do the excercises, stand on my Vibrapower to get the circulation perhaps going. I cannot bear it if one of my cats walks across my legs, not pain but unpleasant as if my nerves in my legs stand on end. I do have "restless legs" regularly which is driving me mad. Mainly happens at night or late evening. Tried walking around, excercise, rubbing, creams and gels to no avail. My feet feel "stretched", I wear bedsocks as my feet have always been cold, after an hour or so giving a little comfort.I have heard that people with PA can have serious problems with their legs, some ending up in wheelchairs. Looking forward to any response from fellow sufferers, thoughts and suggestions, thank you.
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