Neurological Consequences of Pernicious Anaemia – time to have the conversation

30 Jul, 2017


We know that there are serious failures concerning the tests used to diagnose Pernicious Anaemia. And we also know that patients face a long journey before they are eventually told the reasons for their symptoms – 33% waited over ten years before being diagnosed.

Nerve damage

Left untreated Pernicious Anaemia can and does lead to nerve damage which leaves the patient permanently disabled; some seriously so. Although there is some evidence that Methylcobalamin repairs damage to the Myelin Sheath that is responsible for ‘speeding up’ nerve signals and which may have been damaged due to lack of B12. Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia (SACD) is a serious condition but, unfortunately, not always on doctors’ radar. Often, patients with nerve damage resulting from their Pernicious Anaemia being diagnosed late will be suspected of having Multiple Sclerosis which leads to several expensive and often unpleasant tests before the true nature of their nerve damage is revealed.

Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia

There are two main problems associated with patients being diagnosed as having SACD. Firstly, they symptoms are very similar to the symptoms of MS, unusual gait, numbness, balance difficulties etc. and so it’s reasonable to expect physicians to suspect MS when patients present with the symptoms. Secondly, and perhaps more importantly, there seems to be a problem with doctors associating any neurological damage with the patient’s inability to absorb B12 from food; and then there is the belief that is widely held that once replacement injections are started then the patient’s symptoms should disappear – including any neurological symptoms.

Neurological Alliance

We want to raise awareness among medical professionals of this serious aspect of Pernicious Anaemia and so we are pleased to announce that we are now members of the Neurological Alliance
– an alliance of over 80 professional and patient support groups that are concerned with diseases of the nervous system.

The Mission of the Neurological Alliance is to ‘To raise awareness and understanding of neurological conditions to ensure that every person diagnosed with a neurological condition has access to high quality, joined up services and information from their first symptoms, throughout their life’. And it is through the Alliance that we hope to make medical professionals more aware of this serious consequence of Pernicious Anaemia.
We have yet to attend any meetings or seminars but when we have we will update you on any progress being made.

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The more members we have the bigger our voice!

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  1. Mary Epke

    Such good news . We are really blessed with our P.A.S. Thank you for all you do for us and future generations .

    • Sheila

      I found out about this group through an article in the Washington Post (3/28/17). It caught my attention because my grandmother, who was from Ireland, was one of the first people in the U.S. to be studied and was mentioned in some sort of medical book many, many years ago!

  2. Susanne Higgins

    I have been down that exact pathway! Tested for ms at the beginning of the year but clear of diagnosis of ms. I was given Gabapentin to help me & it does but I still have all the symptoms. The nerve test they showed the results that my reactions were very fast. Very interesting article.


    I have always felt that if we -B 12 deficient – psople all work together ..we can make big changes
    .Getting the Professionals on our side is a big plus… Together we are stronger…

    • Kathleene Parker

      I’m not as optimistic about getting professionals “on our side.” For years, I KNEW something huge and systemic was underlying my digestive issues and fatigue, I REPEATEDLY raised the issue of my increasing neuropathy to doctors–in most cases only to be told I could not possibly have neuropathy since I don’t have diabetes.! Then, I saw a PBS program on Mary Todd Lincoln’s pernicious anemia, and immediately sought out the CORRECT tests and thought, “Finally, now I’ll have doctors engaged in helping with my now-entrenched digestive issues.” Wrong! Their response has boiled down to, “You’re getting B-12 shots. What more do you want?” Our medical system is OVER WHELMED, broken and dysfunctional. I see little chance for reform.

    • Lisa Perkins

      I have pernicious anemia for 20 years . By the time they found it I was in congestive heart now 55 and have to take shots twice a month because my body cannot hold on to it any longer than two weeks. The neuropathy,loss of balance and coordination is bad .I would love to find something that would help my leg pain. So far nothing works.

  4. S FitzGerald

    Excellent news. This condition has been forgotten and underestimated for too long.

    • Elizabeth

      Absolutely nobody really cares it’s about time we did something to bring this out in the public domain

  5. Linda L. Jenkins

    Great to hear of advancements. Disabled by this condition at 74 is so disheartening. Please keep me informed. I’ve taken the B 12 injections for 35 years and my failing health continues. Thank you for this new information.

    • Sammy Palfrey

      Hi i am aporoaching 70 and have been getting B12 injections every 3 months for 20 years and a few years ago i kept getting pains in arms. This was diagnosed as neuropathic pain but was put down to my ME. No doctor has connected it to my P.A. What is causing your deteriorration in your health associated with P.A.? I know so little about it all. Thanyou. Sammy

    • Kathleen Stringer

      I’m so sorry. I began down this road in 1966 and was given iron supplements. It didn’t help the horrible pain in bones & muscles-at75 still suffer but I’m now also cold all of the time.

      • Kathleen Stringer

        I had just had my second child in 10 months

    • Kelly Smith

      My wife was diagnosed with pernicious anemia last February and she has nerve damage in her right leg. She’s taking B-12 injections but she continues to use a cane to walk. Is her damage likely permanent? Her doctor said her nerve damage could heal in 1-2 years. Thank you for any answers. Kelly

      • Petra

        Your doctor is right that, with the right treatment (enough injections), it can take a few years to heal neurological symptoms. Depending on the severity, the amount of time between symptoms starting and start of treatment and individual other factors, some damage might be permanent; but this can only be assessed after that period. We’ve seen people still improve neurologically in the second (and even 3rd) year of treatment.

      • Ana

        Hello… I’ve had neuropathy in my feet and in my 7th cervical (c7). When it’s flared up it feels like a knife is lodged there and it also causes burning poison down arms and fatigue. I’m also highly intolerant to gluten, dairy, soy, processed sugar and preservatives. Eating these things causes a major flare up. I started a plant based/low carb/fat diet (along with previously started b12 injections) and my pain/neuropathy cleared up. I then felt well enough to begin weight training and increased my carb intake. A month later and my neuropathy/neck pain returned. I googled to see if there was any association between PA/b12 deficiency and carb intolerance and found this article.
        Very interesting! I’m going to inject b12 more frequently along with taking glutathione supps and see if that helps as if like to continue my weight training. For those of you that don’t train and just want relief.. it may be in your best interest to lower carbs significantly (not completely but down to 50-70g/day) I’m not talking fruits and veggies, but starch carbs and grains. Also.. PLEASE stop gluten and dairy. These wreak havoc on your body whether you have b12 deficiency or not and more so if you do. It’s a very strict diet and was very difficult in the beginning but so worth it once the pain goes away and you start to feel whole again.

        • Ana

          Sorry.. not “poison” but “pain”.

  6. Mick

    Thank you. What you say about doctors is so correct. Took 6 years to be diagnosed with PA. Then after I have been on meds for a few months one doctor told me my condition should have cleared up and why was I moaning about being exhausted!!!!

    • Kathleen Stringer

      I had one tell me it was ridiculous and should have gone away

  7. Christine Reeve

    Excellent news@ well done PASOC team! I too have been told no longer have PA as on injections! And have had brain scan followed by lumbar puncture to test for MS. Still after 11yrs have Neuro symptoms and also diagnosed Fibromyalgia 5 yrs ago

  8. Susan Milburn

    This is very good news. I was diagnosed very quickly, having sustained a fracture. I had a very on the ball GP who ran a range of blood tests and my B12 was found to be 30mmol the lowest she had every seen. I was found to have pernicious anaemia, but unfortunately by the time I started treatment I had developed neuropathy. I’ve worked very hard since my diagnosis in 2016 in getting fit again, I can now run 3.5 miles not bad for a pensioner!
    Hopefully I can get back to fell walking in the Lakes.

    • Daphne Smoker

      So are you saying your neurophy has improved is this with injections

  9. sue childs

    It is great that the pernicious anaemia society is working with others on this critical issue. So many of us have neuro symptoms and raising awareness of the issues related to b12 defiency with PA is crucial. Thanks.

  10. Shirley Ellul

    Thank God for PAS! I’ve been diagnosed with PA in 2002, a complete gastrectomy in 2003 and b12 shots every week. As I approach the later half of 50’s,I I do realize my instability, forgetfulness, things generally associated with old age and felt defeated. I fugue this is the deterioration I am to go thru. You give me hope that something might change yet in my lifetime to get the medical community to help us get quality of life back.

  11. Patricia Byrne

    I,v just been diagnosed with pernicious anaemia in June,wasn’t given any information about the condition,just was told I’d need injections,I have good days and not so good,,low mood and day I’m my normal self again,is this normal,,I’ve never been sick or had any other illness before,im52yrs old and a woman,my GPS just told me to take valium 2mg if I get a little nervous,thank you

  12. Robyn

    We have pernicious anaemia in the family. Could vagueness, forgetfulness, clumsines, & then teenage depression be a symptom?

  13. Svetlozar Tenov

    Very good news, thank you so much. I was diagnosed with b12 deficiency of 50 pg-ml at the beginning of 2017 after 7 months of pins and needles and great tiredness. I have now peripheral polyneuropathy and I am doing myself injections 3 times a week. I am from Bulgaria and I feel better and better. Some months ago very famous doctor say to me to stop injections and that I will never go healthy again ! I don’t believe him of course. I am 58 years old man and I hope and believe the people of this society.
    Thank you again.

  14. Kelle Cox

    Diagnosed 6 weeks ago with all the symptoms. Lacking intrinsic factor has been discovered. Many symptoms slowly improving however the paresthesia is continuous in my hands and one arm. The pain is not improving and seems to be worse after using fingers. Is this going to get better? If so when? What will help? Im returning to work in 3 days and use my hands continuously. One other thing about me is my B12 was 235 and my CBC was in range but trending to look like PN at diagnosis time. I started receiving B12 injections and my level is now in normal range. Thats what health care practioners keep reminding as well as its your carpel tunnel which was now discovered during nerve conduction test. Anyone familiar with all this? In the beginning it was balance issues, brain fog, fatigue, and numbers that brought me to medical exam which led to neurology consult and numerous test. Can anyone tell if and when and if I will recover? Thanks Kel

  15. S

    I know this article is a few years old but thank you! I am 29 years old and a mother of 4. I lost feeling in my arms 2 years ago. I started my battle to figure out what was wrong with me. Test after test. Doctor after doctor. I finally have all of my answers. I just hope its not too late to reverse some of the damage. I can live with my arms hurting and the pins and needles. I just want my cognitive function back. I ended up having systemic lupus, narcolepsy, and pernicious anemia. All were in my family history but all the doctors insisted I was too young and too healthy to have any of these things let alone have them all at once. I have possibly had all of these for over 20 years. I had to advocate for myself because the doctors wouldn’t listen. Even with abnormal blood work. Keep pushing. Demand the tests.

    • Louise

      I totally agree with you! Hoping & praying for healing for you & everybody here ❤

  16. Connie Carver

    My father had pernicious anemia he took B12 injection from 1957 to 1990 every three month . He started B12 injection at age 54 took them until he almost 87. He was a patient in research project in 1957 a medical school in Georgia. My was ill for 7 years before began taking the B 12 injection. I have a sister who 28 when she found she had pernicious anemia she did not started taking B12 injection until she 58 . I have brother has pernicious anemia who injection who was in 50’s when started injection of B12 he now 81. Pernicious anemia was once fatal and people died before they were 40 now live be in their 80’s. As the youngest 8 children I know pernicious anemia no longer fatal . There no cure but B12 injection a person can live full life.

    • Maria

      I suffered many of the PA symptoms for at least 12 years before I finally figured out the problem. Many doctors, many random unfounded diagnosis. Permanent damage now. Still when I complain of a symptom, doc doesn’t connect the dots. Very frustrating. More doctors need to understand this disease.

  17. Connie Carver

    I was result of my father treatment for pernicious anemia in 1957 . The B12 injection daddy start taking every three month result in my father become a father for 8 times at age 55. My dad lived till I was almost 32 years old and had a full life and was in good health until four years before his death 1990. B12 injection were blessing to our family they enable have our father we were all adults.

  18. Betty Simms

    Can having microcytic anemia for a year cause the myelin sheath to be permanently damaged?

  19. dawn

    I was diagnosed with PA at the age of 28 my then GP thought I had suffered with it for years before and I had the diagnosis and had to have 20 loading doses because my levels where so low. I then went onto 3 monthly injections , I am now 54 and for the last 6/7 years I have suffered numerous falls am in constant pain all over my body,pins and needles in my hands and feet ,suffer with palpitations ,brain fog and am exhausted for 8 weeks of the 12 as the injections no longer see me through the 12 weeks ,the GP I have now refuses to listen and dismissed my symptoms and tried to treat me for depression, yes I am depressed but only because I feel so rough all the time .4 years ago I was diagnosed with a compression of the c7 and nerve damage in my spine I’ve now developed severe pain in the lumber spine area that affects my legs and quite often my balance I was sent for an MRI scan on the lumber spin back in march this year I am still waiting on the results from the neurosurgeon we are now in November I can no longer work (I have been a carer for 37 years ) as they say I need an op on my neck .i feel so let down by the GP and the neurosurgeon I know we have had a pandemic and things are tough but they make me feel as though I just don’t matter . I keep telling them that my condition improves after my injection but gets worse after 3/4 weeks this tells me I need the injections more frequently but it falls on deaf ears I also have Raynauds and Gerd form what I have read they all go hand in hand with PA I have tried taking B12 tablets but they don’t make any difference has anyone got any suggestions I am getting pretty desperate now ,I want to go back to work but its impossible how things stand.

    • sasha

      It really sucks that people do not take PA as a serious illness. Like you, my problems have been expressed but no one ever takes me seriously because it is something that you cant physically see. I was diagnosed at the age of 30 and the doctor said if I had waited any longer, I would have died. I have been living with this diagnosed for the last 4 years but expressed what I was having as symptoms for years before that and now have serious complications as a result of it being untreated for so long. I wish a DOCTOR not a PA would see these comments so real help can be received for everyone suffering from PA. And not just put it off as “depression”. I have been without my injections for 2 months (3 times a week) because my doctors keep getting switched on me without notice. I hope you find some answers soon because this is an illness that is not fun to deal with and destroys any form of “happy” that we have left.

      • J B

        Dear Sasha I know what you are going thru.
        PA is a disabling crippling disease.
        Everyone thinks You are OK but you are not.
        They don’t understand why you aren’t getting things done or aren’t employed.. I knew I couldn’t get a job even tho I looked OK, because I was so exhausted all the time & sometimes my memory or my brain didn’t seem to be functioning properly.
        It isolated me & caused depression along with a multitude of other issues.
        I started taking Intrinsicon yrs ago, then I couldn’t find it, but I found Foltrin also as Folcon. It works. You should look into it.
        If you decide to take it don’t expect quick results.
        I forgot to take it for over 3 yrs. I started taking it again. Been on it for a year & I have improved but I have a long way to go & as we age everything takes longer to work.
        Also do full body exercises every am & trying to walk at least 2 o 3 days a wk for at least an hour.
        I’m Slow walking but slow is more important than fast.

  20. Sally

    I was diagnosed with pernicious anemia 6 months ago and have been doing B12 shots at first daily now down to once per month but my balance issues are still so bad. I feel like I’m wobbly all the time and am so tired. Does anyone know if pernicious anemia is linked with drinking alcohol? I don’t drink daily but am wondering if I should stop completely. Please advise if you can.


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