I have B12 deficiency/Pernicious Anaemia now Dementia type symptoms

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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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9 Replies

  • Posted

    Wow! I think you've said it all Marcelle if only your "one size fits all" doctor would read your post.

    I've had P.A. for 45 years and was put on 4 weekly shots of cyanocobalamin.

    I knew nothing about the condition, knew nobody else who had it and neither doctors or nurses at bmy practice ever asked me how I was coping.

    Down through the years I noticed a return of symptoms in the run up to the next injection but when I asked for an increase in frequency I was simply laughed at and told "it can't be your P.A.. because you're having the injections - go away!"

    Six years ago I joined the Pernicious Anaemia Society and my first question went  "am I the only person in the world to feel the need for more frequent injections?" and was astounded at the nimber of replies stating No - I was not alone.

    It's been a long fight but from July this year I am now having my cyanocobalamin injections every three weeks.

    I'm not a medically trained person and I sincerely hope you get some answers and solutions from someone on here and wish you well for the future.

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  • Posted

    I know a lot of people do there own injections now in between as 12 weeks is far to long for some people as one size does not fit all
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  • Posted

    I see clivealive has answered you and he knows I have a great respect for him because he is usually spot on with things, and gives great advice.

    But the only thing I would add is whilst I was doing my training (I'm a failed student nurse, due to undiagnosed B12 deficiency) when I was in Psychiatry clinics with consultants, they were obcessed with Foliate levels particularly in those over 65 because folate deficiency is highly linked to dementia and B12/P.A , I'm not sure on the exact mechanisms but it also causes high homocycstine levels which are toxic to the body. So I would speak to a doctor asap about having your Folate and homocycstine levels looked at because if I'm right you may stand a chance of at least some improvement, although It maybe very subtle (as in my case, my blood pressure has gone from high, to normal). Also if you feel that things aren't happening quick enough for you refer yourself to a private consultant haematologist in your area. Please keep me posted!

    Good luck

    Kelly

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  • Posted

    Have you had an EGD to biopsy for Hpylori?? If not, please have it done. Other wise ask for a breath test for HPylori. This thing has nearly killed me. Pernicious anemia.. low b12.. Low magnesium.. Heart palps.. Fatigue.. Nausea.. Sinus infections.. Gum disease.. Gallbladder disease.. Hypoglycemia.. Tachycardia. All of this was done to me by hpylori infection!
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  • Posted

    Hi again, I have re-read the information you typed and I have read a little bit more about the dementia and Folic acid theory.

    More I read about what's happening to you more I feel that you may have a form of anaemia linked to your B12, so you need to get that sorted, then get into a effective treatment regime with the B12, at which point start looking into the Folic acid issue, via blood tests and diaries, and a helpful G.P, but this is all in a ideal world!

    So going private and seeing a Consultant haematologist may get you back on track a lot sooner, and other doctors dont tend to ignore other doctors.

    Back to the dementia and folic acid thing! Im guessing you are in your 60s, and my understanding is Psychiatrists are aware of Folic acid deficiency causing havoc with some people over 65 and it's not a huge leap of imagination to think you might be prone to Folic acid deficiency on 3 counts (1) your approaching that magic age of concern (2) you have a B12 deficiency/ P.A (3) you have not been eating very well.

    If you enter "Folic acid deficiency" in a search engine you won't get any information regarding folic acid and dementia and effects neurologically, but type in "Folic acid and dementia" you will get some results, also it might be worth reading about Homocystine which I believe will be helpful to you or certainly your G.P.

    Try not to be fobbed off with "your not over 65" because the research appears to of been done on the over 65s and if tests show your deficient, you are deficient regardless of age!

    Just a word of warning for anyone reading this consult a doctor and do not start supplementing, with out medical supervision, because as much as Folic acid can improve your health it can also destroy it!

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  • Posted

    I see that, if you search on the internet, there is lots of information about what people with PA or B12 deficiency do when they are not being treated correctly through the NHS.

    Many seem to join clubs on Facebook, which provide info about how to tackle the issue swiftly, and some groups are actually run by medical professionals such as nurses.

    I'm sure that, as a long term sufferer, you already know that no-one can overdose on B12, as it is a water soluble vitamin and any excess just passes out of the body when you go to the loo!

    I looked through the fact files they have attached to their club pages and it was full of very useful info on how to buy B12 supplies and self-treat whenever you feel you need it, plus all about the vital 'co-factors' needed (other vitamins which must be taken at the same time as B12 to make it much more effective) which most GPs either don't know about or just never mention.

    I'm not medically trained, but have found the info availabe extremely useful.,,,and EFFECTIVE,

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  • Posted

    Hi.  I know I'm late in replying to your discussion but I'm hoping you have found the Facebook group which I did.  I now self inject b12 along with taking folic acid. I am much improved as many are in the group. We have had to take this into our own hands as gps are useless as many specialists . Please mail me and I can advise you if you've not found it already on where to get help . 

    Best. Theresa

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    • Posted

      Have you tried the HealthUnlocked Pernicious Anaemia forum which is allied to the P.A. Society? The FB group I joined has now closed to any further comment
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