im a newbie looking for help for my lovely mum

Hi Everyone, I'm hoping you can help please.

for over 2 years we have been trying to get a diagnosis for my mum.

I noticed around Christmas time a few yrs ago that she was struggling to get her words out.

after a few weeks I took her to the docs who said it was aphasia due to stress and would go if she stopped worrying and to give it 3 months. We gave it a little longer and no change so we went back.

the doctor was lovely but said theres nothing they could give as it wasn't a physical medical condition.

cutting a long story short I pushed and the doctor referred us to the hospital.

She has had blood tests, a brain scan, artery scan, heart scan, 24 hr heart monitor etc etc

every test came back clear.

we have seen so many consultants, the first said the brain scan was clear but it could be very small strokes that wouldn't show up and for her to carry on taking aspirin and statins that she is already on.

another consultant said its not strokes and its just slight narrowing of the tubes meaning oxygen is not getting through to the brain but its nothing to worry about her speech will come back but it could take 10 yrs and he sent her a speech therapist. the speech therapist came and shown my mum picture cards but mum couldn't get the words out. the therapist said she cant help as she needs to know whats causing it to know how to treat her.

another consultant referred her for memory tests and they sent her for another brain scan and shes had more blood tests including b12 and folate.

although we don't have the results from the memory clinic yet on the brain scan or the memory test the lady who tested her did say it wasn't presenting as dementia which was my worry.

she has now been diagnosed with pernicious anaemia and has had her loading doses of b12 (6 injections In 2 weeks) she will then have them every 3 months.

I'm wondering if the b12 deficiency is whats affecting her speech (aphasia)

can it be reversed and why wasn't it picked up sooner as it seems to be quite a common condition

I'm so confused and don't know how to help my mum shes 70 years young.

any advice would be amazing

thank you

39 Replies

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  • Welcome, blondie43. Your mother is very fortunate to have you watching out for her and pressing for her proper evaluation and treatment.

    The standard treatment guidance of going to one shot per three months after a course of loading shots is for uncomplicated cases! Your mother clearly has neuro complications from her deficiency. Please insist that her Doctors read a bit further down the page (or subject matter) in the British National Formulary manual (or whatever reference they are using for treatment guidance) to the section on treating patients with neurological complications.

    Some improvement may come soon. Some improvement may come only very slowly. As example only, I have been in treatment for a little over eight years. I still struggle often for word retrieval, but not nearly so much as before my treatment began.

    Is she feeling better since having her loading doses?

    Please do keep in touch here and let us know how she is doing.

  • Hi thankyou for your lovely message. I will keep pushing for answers. we are going to another appointment on the 13th to get the results from her brain scan. she has already had one and it was clear but they are repeating just incase. many months ago one consultant mentioned her seeing a brain specialist but that never happened.

  • Read through this thread (and see content at links within) __

    healthunlocked.com/pasoc/po...

  • thank you I will x

  • thanks again

  • dementia is among the many possible symptoms of B12 - there seems to be about a 6 month window for reversing the effects so it may be that her problems will get better with the shots.

    as others say 3 months often isn't enough for people - even 2 months isn't necessarily enough. There are supplements that she can try.

    You can find a list of symptoms of B12 deficiency here

    pernicious-anaemia-society....

    tick everything that has applied to date and monitor what happens with them during the loading shots and after them towards the maintenance shot.

    The PAS and other groups are working hard to raise awareness of B12 deficiency but unfortunately it is hard work as there are so many other conditions out there that GPs need to be better aware of. Unfortunately B12 is generally associated with a specific type of anaemia and if that isn't present then there is a tendency to rule out B12 deficiency as a possibility.

  • thankyou for replying

    the dr says she has pernicious anemia, this was only found recently after 2 yrs of many tests. mum has had the loading doses and so far hasn't felt any different really, maybe a little less tired. she hasn't really had any of the symptoms that are listed for b12 deficiency apart from tiredness and her words not coming out.

    they have memory teste her and the I asked the lady who did it could it be dementia an she said it isn't presenting like dementia. mums memory is fine its just the words. she knows what she wants to say but cant say it

  • As kewpie says blondie43 your Mum's doctor should read that patients with P.A. should be receiving B12 injections (at least) every eight weeks not twelve and it may even be that she should have had the loading doses continued until there was no further improvement in her neurological symptoms.

    In amongst all the blood tests was there one for Folate? It is essential that your Mum has a "healthy" level as this gets "used up" processing the B12.

    Hopefully now your Mum will begin to become more like her "old self" but it may take some while before that happens and it may even seem that some symptoms get worse before they get better - this is quite common so don't stress too much unless they become extreme - in which case go back to her doctor.

    Please do try to get the frequency of injections to every 8 weeks and ask about the Folate levels.

    I am not a medically qualified person but have had P.A. for 45 years and am still "clivealive" at 75.

    Well done for looking after your Mum so tenaciously and I wish you both well.

  • thank you so much for your message its lovely to find some very supportive people as ive been driving myself mad trying to get answers. I am always looking on the internet to see what I can find.

    I had never heard of P A before I cant believe how common it seems to be I cant believe they didn't test mum sooner. she has had the folate test and it was fine. mums score for the b12 was 159 but I don't really know how bad that is.

    I'm glad to hear you are doing ok

  • The annoying thing is that test results are looked at rather than the patient and his symptoms and P.A can be so manageable with the right treatment.

    I lived with P.A. for 39 years in complete ignorance of what it was all about and "ignorance is not bliss". I thought I was the only one who experienced a return of neurological symptoms in the run up to my next injection and six years ago I joined the Pernicious Anaemia Society and discovered "I was not alone"... The rest is history (or my-story) :)

  • I'm so glad that you got the treatment in the end and I shall be pushing to get more info out there to my friends and family so they know more about it too.

    I'm so glad I found this site

    keep looking after yourself and keep in touch

  • Yes, losing words is definitely associated with B12 deficiency. It has happened to me and it is really clear that my brain function drops as my B12 level drops. I have done some genetic testing and I do have the mutation MTHFR which means I do not absorb or methylate B12 so I need up to twice weekly injections ( I do my own). Do follow the suggestions above where you keep a list of symptoms and how they react to the injections. You may find you need to be proactive for your Mum. You should also have your own B12 levels checked. My Mum had dementia and many neurological symptoms which I suspect was PA related. Sadly, it was not picked up. Your Mum is so lucky to have you!!

  • Would you mind describing your mum's dementia? Mine ate little, had chronic diarrhea, then at 70 forgot words, then everything, became paranoid and delusional, improved on a home where she was fed regularly and given Ssri s, she was then perfectly sane, but only lived in the present moment. She walked fine, though her bones were very weak. She lived with dementia for 15 years and was still sane and knew me to the end... a peculiar course of dementia I think.

  • Yes, I agree, a peculiar form of dementia. Dad covered up a lot of Mum's symptoms until his Parkinson's prevented him from chasing after her. Garden hose on at the front of house and by the time he turned it off she had the back ones on. Cooking became a challenge - everything oversalted and she began offering French Onion Dip with quiche etc. She could not recognise her toothbrush but she could get down to do Dad's shoe laces up. She suffered vomiting bouts (gastritis?). We were told she had mini strokes (sorry forgotten the correct term) - I remember her holding her head and saying she was losing her mind. I lived 1200 kms away so would help in the holidays - Mum had an unsuccessful knee operation and used a stick. She would take her friends to cards but had to stop when she drove the wrong way through a round about and later could not work out how to get the car in reverse. It seemed a slide into forgetfulness which is not unlike what was happening to me pre diagnosis. She had suffered long term constipation. Mum was eventually admitted into a dementia ward at a retirement home. She loved food (she fed us 7 kids very well!) and was once found setting up breakfast and had all the residents sitting up at the table. Only problem was it was 3am and the nurses had to get everyone back to bed! She eventually forgot how to swallow and was fed pureed food and laid in a foetal ball at the end. She was actually nicer once she totally lost it as she was quite difficult in a paranoid sort of way as we were growing up. That said she was the best Mum she could be given the circumstances. They owned a farm and she worked hard for many years but from her 60's she was displaying symptoms, I think.

  • Forgot to add she was not obese but suffered mature onset diabetes, another autoimmune disease.

  • Thank you Beth. Hmm. So mine, long term diarrhea, yours long term constipation... sounds as though it is possible that gut issues produced or exacerbated the dementia.

    Mine was also somewhat paranoid in life, or anyway v anxious and over protective of her children, though an excellent mother. She was abused in childhood, so it is not clear what caused what. I am sure, knowing her diet, she would have been low in D and iron and iodine, I would think B12 would have been v low in the range. She seemed to have vascular dementia if anything and your description of the early stages is v familiar, but she did not end up in the foetal ball as is I think very usual in dementia.

    If only I could go back I would have had private blood tests to try to understand what was going on, and I would have given high doses of D etc and B12 in patch form at least. In a home inmates don't get into the sun much and when they did they were loaded with shady hats and skin covering clothes. When she broke her hip the surgeon said her bones were like cheese, and I am not sure whether homes are aware of the necessity for D even yet.

  • hi

    my mum hasn't been told she has dementia they are saying it doesn't look like dementia and sent her for blood test and brain scan. this is when they found she was b12 deficient and has PA

    her memory is fine its just the struggling to get her words out that seem to be the problem,

    was your mum told she had PA?

  • They wouldn't have tested for it properly then. You are lucky by the sounds of it that medicine is more alert.

  • thank you so much I just feel so sorry for her. she has so many worries at the moment as her partner has just been diagnosed with 2 different cancers and is about to start treatment and I'm worried how she will cope with that and her own problems.

    id love mum to move back In with me and her partner could come too. that way I could look after them both. I'm at home so would be here 24/7 for them then.

    I have read about it being hereditary but no one else in the family has had it like my nan and mums sister they were fine however my mums nan had dementia I think and my mums aunt (her mums sister) had dementia too or could that have been b12 deficiency?

    I will try and keep an eye on mums symptoms and will feedback any problems to her Dr.

    thank you again for writing back

    look after yourself too

  • Here it is!

  • thanks x

  • bethatthebeach did you get my reply? I wrote one but cant see it

  • Yes, I think so. Was it a minute earlier than this post? Thank you for that. If you can keep a sort of journal to help the Dr make the right decision. Stress is a big problem for me these days so when a drama occurs I now know I need more regular B12 shots. Not sure how your Mum would feel about that, but it may be worth a try. She will be able to let you know if it is the magic answer! Best wishes, Beth

  • thanks Beth. ive printed off the list now of the symptoms so will have a word with mum and see what we can list for the Dr. I will definitely ask the Dr about more injections and what she would advise.

    lovely to meet you Beth thanks for you support keep in touch and look after yourself

  • Hello blondie43, how lucky your Mum is to have you looking out for her. I am pretty sure the speech issue is part of the problem of her B12 being low. As others have said, she will need injections more frequently than three monthly as she has neurological symptoms. Make sure her GP understands the latest recommendations for treating B12 deficiency.

    It takes a while to reverse what has been a gradual decline in your mum's health. I was diagnosed around three years ago, and had begun to think I had dementia. I was losing track of conversations, I couldn't find the right words for things, and struggled to organise my thoughts. My husband gradually took over several household tasks, or they just wouldn't have been completed. I started doing things, but left them unfinished. My GP has agreed to give me injections every six weeks, and that has made a huge difference to how I'm feeling. It is a good plan to give your mum a good quality B complex vitamin tablet to keep things balanced. Make sure she gets a good diet including fruit and green vegetables.

    I do hope things will improve for her soon. Have a look at the Pernicious Anaemia Society website for a full symptom list. I had loss of balance, numbness (pins and needles), and other symptoms, that I hadn't realised were due to the low B12.

    Best wishes

    MariLiz

  • thank you MariLiz,

    I am due to have a call with mums Dr in the next week or so so I shall definitely mention more regular injections. So far she has only had 6 loading doses which finished about 2 weeks ago so maybe they wont agree as they set them for every 3 months but I shall certainly mention it.

    I am praying it can be reversed as ive read that a lot of the time if left too long its too late to reverse. mum has been like this over 2 yrs.

    I will get her on to B vitamins too that's a great idea and we have added things in to her diet that they say help with b12.

    I'm glad to hear you are doing well now

    keep looking after yourself

  • The guidelines suggest that injections should continue every other day if there are neurological symptoms. I didn't know this when I was diagnosed, and only got my injections increased when I asked my GP if I could have a trial period. She agreed to this, and I was able to go back and report how many things had improved. After this, she agreed to the more frequent injections on a permanent basis. I was so pleased, as I had felt so much better.

    Some of the numbness and pins and needles hasn't gone away, and always comes back when I am overtired. I certainly haven't got as good a memory as before. However, I know, compared to how I was, I am so much better.

    I hope your mum will improve, and with you fighting in her corner, I'm sure she will!

    Have a look at the Pernicious Anaemia Society website for a full symptom list. This might help you with proving to her doctor how many things can be affected by low B12. Sadly, most GP's know very little about it.

    With very best wishes

    MariLiz

  • Thank you MariLiz I'm so glad you got the help you needed from your Dr.

    I hope I can get the same. Mums Dr is very nice so I'm sure she will listen to me and what I find. I have printed off the list now so will start looking at that with mum.

    look after yourself and please keep in touch.

  • You are welcome to private message me if there is anything I can help with. Good luck with getting your Mum the best treatment you can.

    MariLiz x

  • thank you so much and if I can help you or be someone to talk to please feel free to message me too x

  • Many thanks x

  • In the last few months I've wondered how many people are diagnosed with dementia when they have untreated B12 deficiency.

    I think I've had the symptoms for the last few years but they suddenly got a lot worse, with breathlessness, hand tremor and speech confusion. I'd go to say one thing and another word would come out, or I just couldn't get my thinking and speaking to coordinate. It was very distressing.

    ALL my symptoms have been reversed with B12 injections but I self inject ( costs £1 per jab, all in) as and when I feel I need it, about every 2-3 weeks now.

    I'd suggest printing a list of all the B12 symptoms. Your mum then marks all the ones she has ( I had tinnitus, mildly, for years & just thought it was one of those things--it was the first to go with the B12 injections)

    Then rate each symptom out if 10, 10 being the worst. Review this S irking list after a few injections and re- rate each symptoms. That will give measurable proof of improvement.

    I'm glad your mum has you for support. Stick at it,mim sure her leather will improve.

  • hi, I have been wondering that too over the last few weeks as there are so many similarities.

    I'm so glad you are feeling ok now and things have reversed for you that's wonderful.

    I will definitely print out to see what mum has and if they improve.

    I haven't seen any change in her since her loading doses except maybe more energy. her speech doesn't seem any different as yet.

    look after yourself

  • Blondie43, also check a few symptom lists because they are not all the same. At first, my GP did not relate certain symptoms to B12 deficiency at all: cracks and soreness at corner of mouth, hair loss, hip bursitis, daily diarrhoea, even not feeling the injections in my arm at all for a good few months - which was put down to wear and tear of spine. Most GPs do not seem to recognise more than a handful of symptoms and do not seem to realise that these few do not necessarily apply to everyone.

    I looked at the ones from support groups rather than medical advice for GPs: the Pernicious Anaemia Society, for instance, have carried out a survey of people diagnosed with PA, so the list they have came directly from answers from people who have PA.

  • thank you Cherylclaire,

    I'm really glad you got the diagnosis and treatment in the end.

    I will check out that website and make a list of symptoms.

    just cant believe its taken over 2 yrs to find this out when mum has seen endless consultants and had many tests

  • From your mum's point of view, having a daughter who cares, who pushes things on her behalf and who is willing to do all the research is most important, and second- a good GP. Consultants? Appears to be your luck on the day, unfortunately. Trouble is, you wait for months and months, then get such a short time to make your case.... especially hard for those doing it alone, especially if they happen to be having a foggy day! Your lovely mum has got you on her team - all will be well. Best wishes to you both.

  • thank you, it must be hard like you say doing it alone. I know how hard it is for me doing it. I get so overwhelmed with information and not knowing where to start.

    I wish there was more awareness about PA as i had never heard of it and yet its so serious.

    if you need someone to talk to I'm here for you

    take care

  • Luckily for me, I have a (for the most part) very understanding partner. On bad days, my mood swings and craving for solitude don't always make life easy, so I try to make the most of the good days and simple pleasures. It does sometimes feel like there you were, just skipping along and suddenly fell down a very dark hole- and no-one knows you are there!

    I'd never heard of it either, and really believed that I would have 6 injections and be back on track: it was the nurse who told me that this would most likely be forever.

    Don't let it get too much for you: a lot to learn and a lot to teach (I'm thinking of GPs, nurses - but don't bother trying with consultants!) which is frustrating and exhausting, but at least makes you feel like you are doing something other than waiting around for appointments. There are a lot of people on here who know what you are going through, how lonely that is, and how best to protect yourself- from undertreatment and from ignorance as much as from the deficiency itself.

    Enough of that.. today's going to be a good day for all of us. Spring's sprung!

    Thanks for the kind words and speak soon

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