Advice needed please

For the last four years I have been struggling with extreme fatigue and pains. Three years ago my doctor diagnosed me with Cfs and cps and told me there was nothing he could do to help. After collapsing back in November I went back to my gps and they ran some urine tests which indicated my kidneys were under stress so I was sent for blood tests. What she was looking for came back borderline but my b12 was low. So I was sent for more blood tests the following month to check this again and to do a immune thingy test on my blood (sorry I can't remember the name) my b12 came back as 119 and the other test was negative. I was given 1000mg b12 tablets two weeks ago. My problem is I have a swollen and sore tonge which has been since new year I have also been getting tingling in my hands and feet and suffer from pins and needles more than anyone I know does. I have been getting short of breath when I climb the stairs although I'm not unhealthy. I had no idea until I read up on b12 that these were symptoms. I had brushed off my tongue as I could have burnt it and forgotten as my memory is hazy at times, but it's still the same nearly a month on. The tingling I put down to cps or working too hard. Now my doctor has told me I'm to wait two months before seeing them again as I need to give the tablets time to work. Should I go back with my symptoms or will they tell me I still need to wait?

38 Replies

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  • Forgot to mention I have a well balanced diet I eat meat and dairy at least once a day.

  • There are several possible absorption problems that can lead to a B12 deficiency - an autoimmine response is one which presumably is what they were testing for - IFA

    The test for IFA is at best 50% accurate so a negative result doesn't actually rule out pernicious anaemia.

    Other possibilities for absorption include:

    a) lowering of acidity levels in the gut (generally as you get older)

    b) drug interactions - including PPI - used to treat heartburn, metformin used to treat type 2 diabetes, NSAIDs such as ibuprofen, asprin, some anti-convulsives ... basically a whole load of different drugs

    c) gastric surgery affecting the ileum (where 99% of B12 is absorbed).

    Whilst high dose oral (which is what you have been given) does work for some it doesn't work for everyone. It is working on the principle that 1% of B12 is absorbed outside the ileum which is where the general absorption problems occur so if you are flooding the gut with several 100 x RDA then enough should get through.

    It sounds as if your GP isn't very aware of what can cause a B12 deficiency so is focused on PA as the one that is generally most frequently mentioned in guidelines. They also aren't aware that the tests for IFA aren't very accurate.

    Nor are they aware that the serum B12 test isn't particularly accurate otherwise treatment in the presence of such obvious clinical presentation - including neurological problems - would have been started much earlier.

    You might find it useful to draw your GPs attention to the BCSH guidelines if you are based in the UK - not sure what the equivalents are outside but sure others will be able to help

    bcshguidelines.com/document...

    particularly the summary about treating neurological symptoms and also the treatment protocols on page 8.

    I think you really do need to go back to your GP - armed with a list of symptoms and relevant guidelines ... and you need to be prepared to really push back on any idea that either your problem is dietary - it obviously isn't - or that tablets are going to work as an option for you - at least not at the levels that you have been prescribed.

    It is important that you get treatment as the neurological symptoms you report mean there is a risk that nerve damage could become irreversible if you don't get adequate treatment.

    You may also need to be prepared to push back on the idea that all that needs to happen is that your blood serum levels need to be raised - B12 deficiency isn't a deficiency in your blood it is about not enough active B12 getting through to the cells where it is used. The absorption problem may have been corrected but there may still be problems with conversion to active forms and then to transporting that to cells.

    You could try and see another doctor - though chances are that the next won't be any more aware than the first.

  • Thank you for your reply. I will book an appointment tomorrow.

    Just a bit of background info. I haven't seen my registered gp for myself since I've been at my current surgery. I've seen him once with my son and he was awful so iVe always requested to see another doctor (not that I go often) problem is that although I request to see another doctor all my results go though him and its him that calls me with them.

    I'm not a pushy or demanding person however I can no longer cope with this exhaustion it's been going on for years, I'm only 32 and I feel like I should be retired. I don't know what to do to make myself heard with out being seen as a problem patient. I'm in the UK so the information you have given is great thanks

  • I'm not a great fan of GPs - and not sure that the shared practice regime really works.

    It can be easier to fight for someone else. Problems with B12 will often run in families so may be you need to think of it as not being about you but getting to a point where your children won't have to face similar problems in getting diagnosis etc.

    You could ask for a referral to a specialist - haematologist is the one that is generally quoted in UK 'guidance' but not sure that is really right as it tends to encourage the mistaken belief that B12D is a blood disorder ... it causes a blood disorder but it's actually a multi-system disorder - similar in many respects to diabetes, about as prevalent as diabetes but really, really badly understood - possibly because it is only a vitamin.

    Another possibility would be asking for referal to a gastrology specialist (on the grounds that you want to know what is causing the absorption problems - though must say that personally I think tests are so awful as accuracy and trying to sort out the reason for the absorption problem is something that could easily drive you nuts for years without really getting to the bottom of things).

    You have neurological symptoms so could try for referral to a neurologist...

    However, it really is a matter of luck whatever specialism you chose,

    that you get someone who really knows anything at all about B12.

    It is also possible to treat yourself - it's relatively cheap - a vial costs about 70p so sometimes its a bit difficult to understand why (given the expense of treating the consequences of not treating a B12 deficiency in a timely and correct way) it gets treated like gold dust.

    Vets tend to be more aware of it and I believe it can be easier to get animals treated with B12 than humans but unfortunately they don't allow referrals to vets on the NHS :)

  • My daughter has booked to see a gastro privately, I wasnt sure if this was the right consultant, your comment seems to be saying that it is all pretty hopeless. She is only 31 and her life is ruined. Are you sure there is no hope of an answer?

  • There are some good GPs out there its just luck as to whether you find one or not.

    Not quite clear what the question is that you are looking for an answer to so not sure what hope looks like.

    B12 can be a battle but at the end of the day self-treatment is an option - unlike other conditions like diabetes or thyroid, where you can overdose on the treatment you can't overdose on B12. However if you are looking for a categorical answer that B12 is the problem that is a different matter as there can frequently be more than one thing going on at the same time.

  • My daughter feels like you she is 31 and wants to go part time she is a teacher and feels she can no longer cope as so exhausted and sick with pains in the tummy. My sympathy for you is the GP problem, problems seem to go on for years without the problems being properly respected and treated if treatment is indeed possible. My partner has taken seven months to be diagnosed with cancer all symptoms passed off as something else, anyway now he actually has a name for his condition seems like they cant do enough dishing out whatever drugs he might want, but as for any post op problems same old story you just feel a nuisance. we waited six hours for him to be treated for sepsis, an infection left a few more hours that would have been fatal. the NHS seems to be designed to be against you. It's the system through and through. However I am never again going to ignore symptoms and will try never to care if they think we are being pains.

  • Hi I don't have P A I have a b12 deficiency were my body can't absorb any b12 via what I eat in 2008 I too had low b12 at 121 and was imediatly given a b12 injection never tablets to try after 2 months of this injection my blood test had dropped low again and I asked to be refered to a gastrologist for further test as to why I can't absorb b12 in my food he told my dr to give me 1000mg of hydrocloblamin every 3 months for life. I would go back to drs and tell him thats tabs not working and ask for a injection of b12 1000mg cynocloblamin for a month not tabs and ask to be referred to gastrologist to find out why you can't absorb b12 if after a month of injections x

  • thanks will look into this x

  • Hi,

    The symptoms you describe can be found in B12 Deficency. See Symptoms lists below.

    I ticked all my symptoms on the PAS list and gave it to my Gps.

    b12deficiency.info/signs-an...

    Lots of info on b12 deficiency

    pernicious-anaemia-society....

    See Symptoms Checklist

    "to do a immune thingy test on my blood"

    I'm guessing that this may have been an IFA (Intrinsic factor antibody) test.

    I'd urge you to contact the PAS. It is possible to have PA even if the tests are negative. This happened to the chair of the PAS, Martyn Hooper. Most of my tests came back negative/normal but I have been highly symptomatic for many years.

    pernicious-anaemia-society....

    01656 769 717

    Office open every day from 8am till 2pm except sundays. If you leave a message they should get back to you within a few days.

    These UK documents may be helpful. They make it clear that patients who are symptomatic for B12 deficiency should be treated even if blood tests are normal range.

    I gave copies of these and Martyn Hooper's latest book to my GPs.

    1) ukneqas-haematinics.org.uk/...

    2)www.bmj.com/content/349/bmj.g5226

    3)Google "BCSH Cobalamin and folate guidelines"

    A long document that has recommendations for diagnosis and treatment. I found page 29 useful. This document came out in 2014 and some GPs are not aware of it. its possible that your GP does not know about this document. I was told that the NHS should be following it.

    Books

    "Could It Be b12" by sally Pacholok and JJ. Stuart

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    The most useful thing i have learned over many years of seeking a diagnosis and treatment is to always get paer copie sof my blood test results. I can track chnges over a period of time. I found in the past that what i was told over the phone or even to my face was not always what was on the copies.

    Have you had recent tests for folate , ferritin , FBC (Full blood Count) as well as B12?

    Have you ever had an IFA test?

    b12deficiency.info/b12-test...

    patient.info/doctor/macrocy...

    patient.info/doctor/pernici...

    patient.info/doctor/folate-...

    patient.info/doctor/full-bl...

    Websites

    b12d.org

    martynhooper.com/

  • You need intrinsic factor to metabolise B12 tablets. If you have it whilst waiting for them to kick in. Pigs liver dinner or pate will get into your system probably within the day. Best wishes

  • I would go back to Gp armed with the PA info. I had all the symptoms you speak about and finally got angina which reversed with treatment . I ended up with neuro deficits. It went down to 20 with severe anaemia. Dont leave it please and get well soon x

  • 119 is far too low... I would get really organised and take charge of your health. Once you get all the information together(symptoms and bloods which you can post here or go to PAS who will help) , it is also a good idea to take someone (who knows you well) with you, so they can advocate for you when the discussion gets lively.... don't leave it because you will feel so much better with proper treatment. It will be a life changer. And it is dangerous to wait till you have damage beyond repair.

    Don't forget to log your symptoms.... check for the list on this site- Drs love evidence based medicine - so give them the evidence. Good luck.

  • Thank you everyone for all your help. I've got another appointment for Tuesday so I'm going to make sure I go fully armed. I've read that it could run in family's and my mum suffers terrible with anaemia to the point where she is often hospitalised and given blood transfusions however she has not been given any reason as to why she is anaemic. We live 200 miles away from each other so we are not under the same gp. Is this worth mentioning or will it be shrugged off as she hasn't been given a solid diognosis she's just been told she's anaemic?

  • Also I forgot to mention the doctor I see is fantastic however as I'm not registered with her she runs my treatment and bloods through my registered doctor who seems to over ride everything she says or suggests. Will I end up kicking up a fuss if I request to change my registered doctor? Has anyone done this before? I don't want to end up the woman classed as a hypochondriac who thinks she knows better than the doctors as that's not the case I just want to feel like my old self again.

  • "I don't want to end up the woman classed as a hypochondriac who thinks she knows better than the doctors"

    I was told I was a hypochondriac and in the end I had to resort to treating myself. B12 is the only thing that has ever made a difference to my physical and mental condition. I was trying to get GPs to address the fact I had B12 deficiency for years but was ignored so in my personal opinion sometimes patients do know better. If I had accepted what I was told by the doctors and not treated myself I think I would be showing signs of dementia and spinal cord degeneration by now. I would still have preferred to have had NHS treatment though.

    "Will I end up kicking up a fuss if I request to change my registered doctor?"

    You have the right to change your doctor and I don't think you have to give a reason.

    Have you ever considered moving to another surgery?

    "my mum suffers terrible with anaemia to the point where she is often hospitalised and given blood transfusions "

    I have given doctors a brief outline of family medical problems in past. B12 deficiency can occur with other conditons such as Coeliac disease and Thyroid problems. I mentioned auto-immune problems within my family.

    Your poor mum. Has she ever had an IFA (Intrinisic factor Antibody test?

    patient.info/doctor/iron-de...

  • Hi, I'm on the Isle of Wight we can only register with the surgery in your area and there is only one in our area. They are generally good just not the doctor I'm registered with.

    I have no idea about any tests my mum may have had. I just know she suffers with anaemia (we don't get on that well) I know she used to have injections every three months for years when I was younger and that they stopped as they said she was better which then resulted in hospital admissions for blood transfusions.

  • I have a family member on the IOW and I've just found out she's been treated for PA for a few years. Would you like me to find out who she sees? It's a small place and I totally get your concern.

  • "I know she used to have injections every three months for years"

    Is it possible these were B12 injections?

    This is the standard pattern of injections for B12 treatment....loading injections then an injection every three months. People with neurological symptoms should receive more intensive treatment. See Management section in link below.

    patient.info/doctor/pernici...

    "they stopped as they said she was better"

    If she was ever diagnosed with PA, injections are for life. There are other causes of B12 deficiency that would require lifelong injections besides PA. Is it possible for you to find out what your mum's injections were for?

    Martyn Hooper's blog has several cases he has dealt with, where people have wrongly had their injections stopped.

    martynhooper.com/

    If your mum has PA it would increase your chances of having it.

    This link below mentions a genetic connection.

    pernicious-anaemia-society....

    B12 deficiency can lead to macrocytosis (enlarged red blood cells) but not always.

    Macrocytic red blood cells are inefficient and this can lead to anaemia.

    patient.info/doctor/macrocy...

  • I have spoken to her. She is just advised she is anaemic and to eat more red meat. She has a good diet however always seems to be anaemic. I suggested she should go back and get some more answers as to why.

    Im off work today extremely fatigued however I have managed to get information together for my doctors appointment tomorrow. I have written up a list of my symptoms, length of time since it all started, how this affects my life and how much time off work I've missed in the last three months. I am going to explain best I can about my mum suffering anaemia.

    I'm going to ask if my blood could possibly be tested again now to see if the tablets are working if not I'm going to ask if it's possible to start injections. Does anyone know how long tablets take to work? For example am I being reasonable if I ask for my blood to be tested now when I've been taking the tablets prescribed for over two weeks? Should any symptoms have started to ease by now? obviously this is all based on if my body can absorb b12 in oral form. Also is it unreasonable to ask for copies of all bloods taken for the last four years? Some were taken with another surgery before we moved to the next town would my gp have them?

  • Hi I've just read your sorry story and all the great advice. It is important for people to realise their rights and not be afraid to insist on proper tests. Just noticed nobody has mentioned sublingual B12 lozenges that can you dissolve under your tongue which you can buy in the mean time. The B12 is absorbed into the blood stream instead of going into the gut where it can't be absorbed if you have PA. As long as you are symptomatic you are seriously B12 deficient and doctors should take this seriously, unfortunately they are hideously ignorant. Use B12 transdermal spray and sublingual lozenges and get rid of the symptoms, don't wait.

  • "Also is it unreasonable to ask for copies of all bloods taken for the last four years? Some were taken with another surgery before we moved to the next town would my gp have them?"

    My personal view is that it is not unreasonable as long as you are willing to pay for copies. In past I have been charged 50p a copy but occasionally the copies have been free. It might take them a couple of weeks to get round to doing all the copies if it's a large amount. If you have had lots of blood tests over the years it might even work out cheaper to ask for a complete set of your medical notes.

    Most NHS surgeries would charge around £50 perhaps more for a complete set of notes. Can be interesting to see what has been written in the past. You have a right to copies of tests and medical notes. I think the only situation in which they can refuse is if they feel it will harm you in some way to have access to your notes/test results.

    I have heard about people finding out from medical notes that they have been diagnosed with B12 deficiency/PA in the past but for some reason they were not aware of it.

    Charlie mentions sublingual lozenges which I use but personally I find injections have a much stronger effect. Everyone varies though. Some people use skin patches, oral tablets, nasal sprays, oral sprays. Have you looked into different types of cobalamin eg methylcobalamin, adenosylcobalamin, hydroxycobalamin and cyanocobalamin?

    "It is important for people to realise their rights and not be afraid to insist on proper tests"

    I agree with Charlie's statement above.

    One last thing is to be aware that for some people supplementing prior to tests can affect the results. Some people find that if their B12 blood levels rise when they start supplements their doctors think that there is no longer a problem and may even stop the supplements.

    My personal view is that if a patient is symptomatic for B12 deficiency then they should be treated whatever their b12 blood levels are. The documents I gave links to in a previous post above, make it clear that there should be treatment if the patient has B12 deficiency symptoms even if B12 levels are "normal" range and in some cases even if IFA tests are negative.

    Is your GP going to give you an IFA test?

    There is also homocysteine, MMA and Active b12 but the results of these may be affected because you are on oral supplements.

    UK Charity gives free second opinions on medical treatment/diagnosis

    hdapatientcaretrust.com/

    020 7935 8366

    HDA Online contact form

    hdapatientcaretrust.com/con...

    I think you need to give a full medical history. i think they respond quickly when someone contacts them.

    I am not a medic just someone who has struggled to get a diagnosis and wants people to have useful info.

  • Thank you.

    I don't believe i have had more than 4 blood tests one December one November, then one three years ago and some when I was pregnant four years ago. I'm just interested if my b12 has been low all along or if there is signs of it dropping. I understand doctors are pushed for time however I just feel you never actually get all the info. After reading the links that everyone had kindly posted I'm interested to look at my blood results myself.

  • Afternoon guys,

    Quick update been to doctors this morning and I found out it was the PCa they did that came back negative.

    With all of your help I managed to list and describe all of my symptoms today and explain the best I could about my mums history. With this information the doctor has come to the conclusion that she believes that my b12 is due to diet and I suffer from chronic fatigue syndrome. She has decided to start loading doses of b12 and an antidepressant for the chronic fatigue. She has then said to see her again in three weeks and she will refer me for blood tests three months after the loading doses.

    I know the b12 is not diet related but because she has suggested a good plan I'm happy to go with this as surely if it's not diet related it will show low levels again on my next blood test. Is the correct?

    Thank you for all your help guys you've all really helped me out today and I can finally see light at the end of the tunnel. I'm very grateful.

  • Hi Amandajayne - please consider if your GP tests again for the B12 after you have been supplementing - that the results will be skewed and of little meaning. I have even read here that Docs have stopped injections for people with PA -when they are needed for life Of course it is mentioned in the Guidelines for GP's - that are rarely read.

  • "I found out it was the PCa they did that came back negative. "

    Did they do an IFA(intrinsic factor antibody test? I have read that a PCA test does not always give reliable results.

    b12deficiency.info/b12-test...

    I found it helpful to look at page 29 in the BCSH Cobalamin guidelines, this gives guidance to Gps on treatment and diagnosis of b12 deficiency.

    "she believes that my b12 is due to diet and I suffer from chronic fatigue syndrome"

    I'd urge you to ring the PAS when you have an opportunity. I found them helpful to talk to.

    pernicious-anaemia-society....

    01656 769 717

    Martyn Hooper has written on his blog before about the misdiagnosis of PA as ME/CFS. Many of us on this forum have had a diagnosis of ME/CFS or Fibromyalgia or another condition in the past. My personal experience is that once a person has an ME/CFS diagnosis medics stop looking for a reason for symptoms.

    b12deficiency.info/misdiagn...

    If you are a vegan or vegetarian then B12 deficiency due to diet is more likely. If you are neither vegan or vegetarian then I'm surprised your GP is not looking at other possibilities besides diet.

    b12deficiency.info/what-are...

    "and an antidepressant for the chronic fatigue"

    Some medicines can affect b12 uptake, some affect folate uptake. See link above.

    Do you know why the GP is giving you an antidepressant? Some Gps view ME/CFS as a mental illness. The World Health organisation define ME/CFS as a neurological condition.

  • Thanks for your advice. They haven't done the intrinsic factor test as far as I'm aware.

    I'm not vegetarian or vegan I eat meat and dairy at least once a day minimum.

    I questioned the antidepressant and was told that some people find it helps with the pain and fatigue of cfs.

    I'm on my fifth injection now and the tingling has lessened and my tongue is no longer swollen or sore. However I'm still extremely tired I could fall asleep standing up.

  • Hi,

    I'm very surprised they have not done an IFA (Intrinsic factor Antibody) test.

    If you ring the PAS they might be able to tell you more about the IFA test and the circumstances under which GPs usually order an IFA test.

    If you google "BCSH Cobalamin and Folate Guidelines" and look at page 29, a diagnosis flowchart, it clearly indicates that if there is a strong clinical indication of B12 (Cobalamin) deficiency whether through

    1) low B12 levels

    2)typical symptoms of B12 deficiency with a B12 result that is in range

    then the first thing that should be considered is an IFA (Intrinsic factor Antibody) test

    I gave a copy of page 29 to my Gps.

    This is a link about writing a letter to GP if unhappy with treatment/diagnosis

    b12deficiency.info/b12-writ...

    point 3 is about being refused diagnostis tests.

    b12deficiency.info/b12-writ...

    Note to anyone who prints page 29..I struggled to get the correct page to print off...probably brainfog but make sure the right page prints with the flowchart...

    Link to article on Martyn Hooper's blog about parliamentary questions asked about the misdiagnosis of PA as otehr conditions including ME/CFS.

    martynhooper.com/2015/08/04...

  • Thank you I'm back off to the doctor tomorrow as my loading doses have finished. I'm hoping she will approve more as I felt 50% better towards the end of them. The last one was on Monday and today I have already started going down hill again. I feel if I had another two weeks I will feel very close to being my old self again.

    I will ask tomorrow about the intrinsic factor however I'm concerned if she does another blood test now she will see higher readings of b12 because of the loading doses and refuse any further injections and I really really feel I need them and that they help.

    I have considered self injecting if I'm refused further injections. Can anyone recommend sites to purchase from?

  • Hi,

    I think page 8 in the "BCSH Cobalamin and Folate guidelines" (easy to find if you do an internet search) says somewhere that after supplementation starts then further testing of B12 results is not necessary.

    Has your GP got a copy of the BCSH Cobalamin Guidelines?

  • Thank you I'm going to be calling pas in the morning if I can get my self up out of bed. I've been refused further loading doses today even though the tingling ect is still there. I'm devastated I really feel if I could continue I would get back to my old self again. I've been told I can only have one three monthly.

  • Unfortunately it's the same all over the UK. 6 loaders then 12 weekly and they don't budge from it!

    They don't "go by" the guidelines and treat the patients symptoms, they do... just the basics.

    There is a list somewhere of "good doctors"

    Those who help more.

    If you are near one, change and stay!

    I feel for you, I gave up after waiting for my 1st 12 weekly and bought my own!

  • what does cps mean

  • Cfs stands for chronic fatigue syndrome or ME

  • Hi,

    "I've been told I can only have one three monthly."

    If you have neurological symptoms (and tingling would normally be considered as neurological) you should be allowed extended loading doses and then injections every two months. Page 29 in the BCSH Cobalamin and Folate Guidelines" I think mentions this. Have you got other neurological symptoms besides tingling eg tinnitus, memory problems etc.

    This treatment info is in BNF (British national formulary) Chapter 9 section 1.2

    Your GP probably has a copy of BNF on their bookshelf. This link below contains similar info to BNF in Management section.

    patient.info/doctor/pernici...

    This link talks about writing to GP if your neurological symptoms are being under treated.

    b12deficiency.info/b12-writ...

    There is an e-mail contact on the website for the person who runs the website.

    I hope the PAS were able to help. I gave my GPs a copy of Martyn Hooper's latest book

    "What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    This book is up to date with the latest BCSH Guidelines.

    I also found this link useful.

    b12deficiency.info/what-to-...

  • Thanks sleepy bunny your help has been huge since I first posted.

    I did call pas there was no answer on Saturday so I emailed and Martin replied asking me to call so I'll call again tomorrow.

    I have however today managed to compile a letter to my practice manager outlining my concerns and advising that the surgery in my case doesn't seem to be following bcsh guild lines as I've been refused further loading doses.

    I've also outlined that no one at the surgery has investigated why I'm low in b12 it has just been presumed it's my diet as PCa test came back negative.

    If contacting the practice manager fails where can I complain too?

    Yes I do get tinnitus at times. I mix up letters and words so it takes me a long time to write anything, dizziness/ light headed, unsteady on my feet at times which sometimes looks like I've had a little too much to drink, I forget things easily. Which makes it hard when trying to speak to my doctor I a two min slot. Also I have not mentioned to anyone else as I fear they will think I'm mad and it's all in my head but I do at times have voices not bad ones things like when your thinking but can actually hear for example my children as if the were stood right next to me but they're at school/nursery. I don't know if that makes sense.

  • "unsteady on my feet at times which sometimes looks like I've had a little too much to drink"

    Do you have a strange way of walking? B12 deficiency can cause changes to someone's gait. This can be a sign that the spinal cord is affected. Martyn Hooper , the chair of the PAS,suffered subacute combined degeneration of the spinal cord. The PAS may know something about symptoms of unsteadiness.

    Someone who knew about B12 deficiency asked me if I could walk heel to toe with my eyes closed. I was very wobbly. I had had neurological examinations but they were always with my eyes open. B12 Deficiency can cause difficulties with proprioception.

    A link to an old HU thread I started on Proprioception.

    healthunlocked.com/pasoc/po...

    Have you ever had a Romberg's test?

    en.wikipedia.org/wiki/Romberg's_test

    This test looks at what happens when a person stands with their eyes closed.

    You describe a lot of symptoms that can be found in people with B12 deficiency. Have you ever written out every symptom you have? I give a copy of all my symptoms when I meet a new doctor. Link below may be interesting from the b12d.org website.

    b12d.org/symptomsassessment

    b12d.org have a contact page. They can take quite a while to reply .

    b12d.org/contact

    I am not a medic just someone who has struggled to get a diagnosis and wants people to have useful info.

    B12 deficiency can cause a huge range of mental health symptoms and physical symptoms.

    Did you mention in the letter you have written that you have not had an IFA (Intrinsic factor Antibody) test?

    if you contact the B12 deficiency info website they may be able to give you some support. there is "contact us" tab at the top of the page. Good luck.

    b12deficiency.info/

  • Hi sleepybunny I have written down all my symptoms and read them out to her which prompted the loading doses.

    I don't think I have a strange way of walking and no one has ever mentioned they think I have. I get comments on the way I tend to walk into or bump into things though.

    I requested copies of all blood tests for the last five years I've collected them today and guess what they have only given me the last two years and have left b12 levels off apart for the last blood test I had. Seems there is a page missing on the others.

    I've handed in my letter to the practice manager today I'm going to give him until Thursday to contact me.

    I just want b12 injections is that too much to ask?? It's not as if they are pleasant injects and the acne is awful but the pros out way the cons.

    If I was a drug addict I'd be given treatment, or a diabetic insulin!! I really don't understand surely if someone who has been suffering for 4 plus years improves on injections but declines when off then surely that in its self warrants treatment?

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