B12 injections and neurological symptoms

Posted , 21 users are following.

Every day for 2.5 months, I've had paresthesia/neuropathy (in other words pins and needles, tingling, generally weird sensations) in both feet and both legs. My B12 was tested and isn't "drastically" low (275), but still low to where my doctor says B12 deficiency could definitely be causing these symptoms.

I've started a B12 injection regimen where I get two a week for 4 weeks, then once a week for another 4 weeks, then once every two weeks for a month (and as needed from there on out, I assume). So far, I've had the first 6 injections, over a period of 19 days. But here's my question - can it be normal that so far I've felt little, if any, improvement? 

A little more background - my first 3 shots were given under the skin, and it was as if I never got the injections. I didn't feel better, I didn't feel worse, nothing. Starting with the 4th shot, they've been giving them to me into the muscle. Now at least I can tell there's some sort of "reaction" going on. After each of the past 3 shots I've felt very tired the day of the shot. Also, the day after the shots my symptoms have been extra bad - really magnified. And one day I even had new stuff going on like burning wrists, feeling wiped out, etc... that didn't last more than one day. But through all this, even though I'm glad to at least feel SOMETHING is happening after the shots, I still can't say that I'm "better." I've read neurological symptoms can take the longest to improve and heal, and I'm hoping this is the case for me. Otherwise I'll start worrying all over again that this is NOT due to B12, and instead is something more sinister, like MS. Although at this point, my doctor doesn't think so. 

Help! Does anyone have any insight on symptoms like mine when it comes to B12 deficiency, and how it all relates to B12 injections and improvement time?

Thanks so much.

1 like, 78 replies

78 Replies

Prev Next
  • Posted

    Hi Molly, I believe that my numbness in my feet are caused by cancer treatment.  I cannot be sure but I have it severe enough that it causes me to have imbalnace which my doctor has no clue if it relates to the numbness.I am thinking of asking him to do vitamin b 12 tests but he will most likely refuse because I had an MRI done and it showed nothing wrong really.  i would love to get rid of this numbness but I fear that I will have it for ever now.  JoJo
  • Posted

    Hi Molly! I found hour comment after a search on Google. I have simular symptoms for the past year together with duzzyness ans fatigue that comes and goes and have b12 blood levels 280. I know there comment are 2 years old but i was sondering how it went for you??  Thanks
  • Posted

    I'm not sure about you but for me I ended up finding out I have Celiac so maybe you should get a genetic test and rule that out

    12 deficiency is common with celiac and I am trying to rebuild my nervous system. It took 10 years for me to find out what the problem was and there are not a lot of doctors that know much about it

  • Posted

    Hello,

    I realize that this is a very old discussion, but I am having very similar problems & am looking for help. I will try to be as brief as possible, but I’d like to be thorough, too. I have been told for years that I have a B12 deficiency. I’ve been on and off the injections. I first took them when I was prescribed Methotrexate. I gave them to myself  subcutaneously and I don’t recall having my levels monitored (though I’m sure they were monitored since I was having lab work done regularly for the methotrexate use & other things that were the root of my needing the methotrexate).. but my docs never said much about my B12 level at that time. After a while I wasn’t getting anywhere with the Rheumatologist (my original one retired and it seemed that none of the others understood my illnesses), so I wasn’t seeing anyone who was doing regular labs on me. Just over 2 years ago I had a brain bleed and when I followed up with a neurologist, they said my B12 was low and prescribed Nascobal. Again, I didn’t follow up as I should have because I haven’t had good insurance in a long time and it seems that most doctors don’t care very much. A few weeks ago I started feeling very ill, and the closest thing I could relate it to was when I was hospitalized for the brain bleed. I didn’t want to go to the hospital, and I was bedridden for over a week. Finally my dad insisted that I go to the hospital, so a week ago this past Saturday (5/26/18) I went to the emergency room. I wasn’t in good shape! Let me go back a bit, I saw a neurologist late last year and he said my B12 level was “very low”, and he had me take 1mL of B12 daily for a week, weekly for a month, and monthly thereafter. He hasn’t checked my levels since. I was scheduled to follow up with him either this month or next. So I presented to the emergency room barely able to walk, and my entire body felt numb. My tongue was swollen and I’d lost about 20lbs in about 2-3 weeks. They did a plethora of blood work and an MRI to check for stroke, clots, and to look at my cervical spine. They said that was to check for a possible pinched nerve and for MS..? I’m actually fairly educated in the medical field but my memory has suffered a lot since the brain bleed. After 4 days in the hospital they let me go and said that it was the B12 deficiency that was causing all of the problems. I asked all the questions I could think of, and felt sure that I’d feel a lot better. The doc asked me how many days I’d been given B12 while I was in the hospital. I told him 3, and he said usually they do it 5 times but he was ok with me just having it 3, and he wanted me to do them weekly for 3 weeks. He said I needed to have my level checked in a week (which would be today, I believe). I told him that I don’t have insurance and he said it’s ok, it’s not that important, just do the injections weekly for 3 weeks and when I get insurance I need to have an endoscopy done to see why I’m not absorbing B12. So here I am a week later, and I feel worse than I did when I left the hospital. I’ve taken 2 injections since I’ve been home (I did switch from doing them subcutaneously to intramuscular, because, like you, it didn’t seem like I was getting anything out of them doing them subconsciously). I last did an injection the night before last, and today I’m almost feeling as bad as I did when I went to the hospital, just not quite as weak. I’m beside myself, because I’m in the middle of moving and separating from my husband (in sickness and in health, yeah, right.. some people), and I have no insurance. So I have no idea what to do! I cannot continue to live this way, I don’t see how I’ll physically make it through the move even, but I don’t know what my options are, and I don’t know if this COULD all be caused by B12 deficiency.. If you have gotten any answers or know anything more since this post I would really appreciate any advice or suggestions. I’ve had so many neurological problems for years, and now I’m wondering if all of this could be because of the B12 deficiency, or if there is more likely another cause. I have told my family how I feel, but no one has anything to advise or suggest and I feel SO alone in this and it’s so scary. The best way I can explain how I feel is that my brain and body are disconnected. Some senses are heightened, like I can hardly even stand my own voice because it hurts my ears. Everyone seems to be very frustrated with me, and I’m beyond frustrated with myself and with the situation! If anyone reads this, I would really appreciate any help!! I’ve been searching for answers and this is the closest thing I could find to my own “story”, though I honestly didn’t get to read it all because even my vision isn’t right and it makes me nauseous to read. ????? Thank you for reading in advance and I pray that someone can point me in the right direction! God bless!

    • Posted

      I can't work out what country you are in and different countries have different protocols in dealing with Vitamin B12 deficiency.

      Do you know if among all your blood tests that you have been checked for Intrinsic Factor Antibodies (IFA) which if comes back positive means that you have Pernicious Anaemia which is a form of B12 deficiency?

      If you are in the U.S. I believe their injection of choice is cyanocobamalin 1mg whereas here in the UK we use hydroxocobamalin. In other countries they use methylcobamalin.

      Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

      Vegetarians, vegans and people eating macrobiotic diets.

      People aged sixty and over

      People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

      People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

      People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

      People with a history of eating disorders (anorexia or bulimia).

      People with a history of alcoholism.

      People with a family history of pernicious anaemia.

      People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

      People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

      People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

      Women with a history of infertility or multiple miscarriages.Can you "see yourself" among any of the above people?

      Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

      Weakness and fatigue

      Light-headedness and dizziness

      Palpitations and rapid heartbeat

      Shortness of breath

      A sore tongue that has a red, beefy appearance

      Nausea or poor appetite

      Weight loss

      Diarrhoea

      Yellowish tinge to the skin and eyes

      If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

      Numbness and tingling in the hands and feet

      Difficulty walking

      Muscle weakness

      Irritability

      Memory loss

      Dementia

      Depression

      Psychosis

      It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

      I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

      A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

      If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.  You may need to supplement with folic acid.

      I am not a medically trained person but I've had Pernicious Anaemia for more than 46 years.

      I wish you well.

    • Posted

      Thank you so much. This information is very helpful. Yes, there are actually several of those categories that I do or may fall under. I was diagnosed with irritable bowel syndrome as a child and have had pretty severe symptoms of that. When I mentioned that I had been prescribed methotrexate, I had a positive ANA (2008) and was sent to a rheumatologist for further testing. She told me that I had parvovirus b19, and I had like 9 of the criteria for lupus. She explained that most people get parvovirus as children and are immune as adults, but I was working at a children’s hospital when this happened. She did titers for the parvovirus for about a year and each time it was still active. She said that the chance of me “ending up with lupus” drastically increased the longer the virus was active, and after 6 months it was somewhere in the 80% range. However, I have been told that while I test positive for ANA, other tests indicate that it’s a false positive. It’s been extremely frustrating, my original rheumatologist retired and I have been to at least 4 since and none seem to be very knowledgeable about this. I haven’t even been getting labs done regularly for several years because I felt as if I was wasting my time & the doctors, because they just do the basics and then say that I should see a psychiatrist. I’m beginning to believe that I’ve had this B12 deficiency for at least the entire past 10 years. I only had my levels checked when I was on the methotrexate, when I had the brain bleed, and this last time I was hospitalized. Every physician I see just chalks up my EXTREME fatigue and general poor health to fibromyalgia and Dysautonomia. I could be to blame, partially, because I have thought those to be the reason I feel bad all of the time, but now I’m thinking that it could have a lot to do with the B12 deficiency. When I get settled after the first of July, I will make it my priority to see a doctor and discuss this concern with them. I’ve had a lot of neurological problems, and when I saw a doctor at Vanderbilt for the Dysautonomia (I am in the US, by the way, I apologize, my brain isn’t focusing well since this last hospital visit), she did the test where you follow their finger with your eyes & don’t move your head. She did it longer than anyone ever has, and she looked inside my ear then said “you need to see a neurologist”. I didn’t, but after the brain bleed I did and I mentioned that to them but they didn’t seem concerned about it at all. I’ve also had a lot of peripheral neuropathy which my family doctor just gave me Lyrica for and when I had negative side effects from that, she gave me two options; increase the dose of Lyrica or take me off and me just deal with the pain. I chose the latter. With everything I’ve read I think I will try to make it through this month and then I’ll contact Vanderbilt and try to get in with someone there. Is there a certain type of doctor you recommend? Oh, and I am prescribed cyanocobalamin 1,000 mcg/ml, 1ml intramuscularly. The doctor at the hospital told me that I should have it for 5 days in a row then weekly for 3 weeks, and he asked how many days I’d had it. I told him 3 and he said “that’s ok, just do it weekly for 3 weeks”. I let him know that I didn’t have insurance and didn’t know when I could follow up to have my level checked and he said it wasn’t a rush just “whenever”, I should have it rechecked and didn’t give further instructions. So I’m pretty lost. I had 5 vials remaining on my prescription, so I just went in and had them all filled. I thought I’d do two then go on to weekly, but I feel so bad if I miss even a day that I went on and took a 3rd one today (so that makes 3 since a week ago yesterday). I’m having major changes in my vision, almost every symptom you listed but more. I’m happy to share more about what I’m experiencing, if you’re interested, but I must stop typing for now as looking at my phone makes me feel very sick. I will check back later. Thank you again for all the wonderful information! It’s so much more than anyone has offered and more than I’ve been able to find anywhere else! Have a blessed day! 

    • Posted

      Have you been tested for celiac?

      I can understand you are under stress because of the insurance situation can you be put on your husband's Insurance while you are separated.

      It's very difficult to work with doctors and medical people if you can't do follow up and continue working with the same people..

      Stress does deplete B12 and any unexpected or extra stress may effect your ability to rebuild the B12

    • Posted

      Don't stress about getting your B12 level tested as once you start on the cyanocobamalin injections it goes sky high and is pretty meaningless - as well as costly in your case.

      Fortunately you cannot overdose on B12 as any excess is excreted via your urine.

      We store B12 in the liver and have several years worth and we only need to absorb 3mcg per day to maintain our level.  Compare that to the 1000mcg in the injection and you will see why the level in the blood rockets.

      In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum..

      Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.

      Here the Intrinsic Factor binds to the B12 and the "B12/IF" Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.

      Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".

      In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.

      You don't say whether you have been tested for Intrinsic Factor Antibodies (IFA). Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

      You also don't mention whether you know what your Folate level is. Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed so please have these levels checked by your doctor.

      As it's nearly my bedtime here in the U.K. I'll bid you goodnight hoping the above will be some help. 

  • Posted

    I would suggest a lab test to see if you are absorbing the B12 and find out if you need to continue taking weekly or if absorption is high enough that you can wean off of it. My deficiency was for many years and it is a slow process but weekly you should notice some sort of difference in energy and Clarity of the Mind. I noticed when I'm hit with an un expected stress situation it seems to deplete me and I believe that is a B12 issue with the nervous system.

    If you have stressful situations trying to clear them up and avoid things that cause more stress.

    • Posted

      Thank you for taking the time to comment. I am under a lot of stress, but I would actually say that I’m under less stress than I usually am. I have been in a bad situation/environment for over 8 years and I’m finally getting out of that, so I feel relieved. The only real stressor I have right now is my health.

      Unfortunately I will not be able to be on my husband’s insurance because he doesn’t have any. I’m hoping that I will be able to get insurance once I am away from him. I won’t get into the reasons why he doesn’t have insurance, but getting away is really my only hope for that, and for my sanity.

      I have not been tested for celiac as far as I know. I had a pain doctor a couple of years ago who said he had a relationship with LabCorp and was able to get lab work done for patients without insurance at a very low cost. I was wishing I had a way to find other doctors who can do that. I’m sure there must be more, but I can’t just blindly start calling around asking. Maybe I could call LabCorp and see if they can tell me..

      My biggest concern is that I feel worse today than I did the day I left the hospital, not quite as bad as I did when I went, but definitely not as good as I did when I came home. I didn’t know if it was normal to feel this way still. I really just need to make it through this month then I’ll be able to get myself on track. I’m desperate to find a way to get through this move, it’s so difficult for me to just walk from one room to another. Not because I’m tired, but I feel like I will faint and my body feels disconnected from my brain, so it’s really hard to do anything. I’m praying for a miracle. 

      Thank you again for your comments. It means a lot for someone to spend their time trying to help me. Right now I don’t have support from anyone because I think they just don’t get it. I think they think I’m exaggerating, which I would have thought before this happened to me. I had absolutely no idea that b12 deficiency could cause all of this. Before the hospital, I would have bet money that I’d had a stroke! This is just so bizarre that lacking a single vitamin can cause one to feel this way. God bless, best wishes! Thanks again! 

    • Posted

      Believe me there are many thousands of "us" out here who struggle to get B12 treatment at a negligible cost to many other medications.

    • Posted

      I’m really concerned about feeling the way I do when it seems ample time has passed and I’ve taken enough b12 that I would think I’d be feeling better. At this point I feel the nearly total “disconnection” from body and brain, and my vision is really bad. My motor skills and my memory are suffering as well. I was released from the hospital on May 29th and when I was in, I had 3 injections of b12 (cyanocobalamin). I got my remaining prescription filled - I had 5 vials. The doctor told me that I needed to have 5 consecutive days of the injections, and when I told him I’d only had 3, he said that was ok and that I could just do them weekly for 3 weeks then monthly until I am able to be seen. I went on and did 2 more injections since I had 5, which gave me enough to do the 2 “extra” and the one per week for 3 weeks, but still I was feeling really bad, so I did a 3rd injection. The pharmacy only gave 3 syringes, and I thought I’d be feeling a lot better by now - good enough to at least go get syringes for my other 2 injections, but I honestly feel as bad as I did when I went to the emergency department, other than I don’t have the total numbness in my body as I did. As far as my motor skills (for example, I was trying to eat cereal this morning and I was shaking so badly and I kept dropping it, and when I managed to keep ahold on it, I missed my mouth several times), this seems to be as bad or worse. My memory is also as bad or worse. I’m wondering if I should try and get someone to help me get the syringes and take the other two injections, or if this is just going to take a while? I read somewhere else that mentions the importance of having your MMA level checked, and I don’t see in my medical file that this was checked. I’m beginning to understand how some people experience “psychosis”, because this feeling is making me feel like I’m losing my mind. I have so much that I have to do, physical work, and I’m becoming panicked because I don’t see how I will get it done. When do you know if the neurological damage is permanent? Or does that just depend on the individual? I’m grasping for straws here, just trying to find a “hack”, some way to get me through the next few weeks and give me the ability to do the things I have to do. If anyone has any suggestions or ideas, please do share. I have asked everyone in my family for help understanding and educating myself about this, but it seems that those who care don’t know what to do, and others who might have suggestions think I’m just being dramatic about it. My vision is another thing that has not improved at all, which I fully believe is contributing to the mental issues. I’m sorry if my messages don’t make much sense, I feel like nothing I say, think, type etc. makes much sense. Thank you all and best wishes to everyone here! ? Oh, and I checked online and from what I see, the doctors here in the US only prescribe cyanocobalamin. I cannot find any information about methylcobalamin being prescribed in the US. I did find where you can order it online without a prescription, but it’s much more expensive than getting it with a prescription. While I don’t have insurance, I have a couple of apps that help save me money on my prescriptions, so the cyanocobalamin isn’t too expensive. Thanks again and please overlook my mistakes I’m sure there are lots. I hope it makes enough sense, I have trouble making sense of anything. 🤦???

    • Posted

      Tell your doctor you want Methylcobalamin B12

      He has prescribed a synthetic B12

      Get the real deal.

    • Posted

      If you look back at my earlier reply from six days ago I tried to explain that it is not uncommon for some symptoms to appear to get worse before they get better so it just may be the case of trying to be a "patient patient"

      It's a good idea to make a list of all your symptoms on a day and mark off on a daily basis which symptoms show an improvement - or - otherwise.  That way you can track your recovery and take comfort from any progress.

      As to boosting your injections of cyanocobamalin, fortunately you cannot overdose on Vitamin B12 as being water soluble any excess is excreted via your urine.  I've been on cyano for over 46 years and had a bad reaction when tried on hydroxocobamalin in the mid 1980s

      It's late evening here in the U.K. so I'll bid you goodnight.

    • Posted

      Thank you. Do you think that will make a difference in the way I’m feeling? I’m not even sure if there is a prescription for methylcobalamin injections here in the US. I checked on both of the prescription savings apps and one showed it but only in tablets, the other doesn’t have it at all. If I type in B12, it shows the cyanocobalamin. I’m just getting really worried that I will feel this way forever, and I’m panicking because I have so much to do and I don’t understand why I still feel so bad. It is so difficult for me to do anything. It’s like a total disconnection between my brain and body. I’m afraid that I have permanent damage. Am I freaking out too soon? Thanks so much for your comment. 
    • Posted

      Ok, I will read it again. I’m sorry, I did read it but I’m not comprehending much at all and my memory has never been so bad. It’s very scary feeling this way, especially when there is no one nearby to tell me that it’s ok to feel this way and no one to help. I apologize, I’m not trying to be over dramatic or anything. I’m just honestly frightened and very confused! Thanks. Hope you’re resting well! 😴

    • Posted

      Another thing, I believe I mentioned in my last longer post, the MMA test. Does anyone have an opinion about the importance of that? Here is the link for the study I read about it. I looked back on the labs they did when I was in the hospital and it doesn’t appear that this was even looked at. Thanks a ton to you all!

      https://www.news-medical.net/news/2004/10/28/5908.aspx

    • Posted

      Try not to stress yourself out..wont help. Can you do yoga? I know what you are feeling and you can heal but it takes patience and time. Diet must be TOTALLY clean. Rest when your body tellls you..listen to your Body.

      A good naturopathic or holistic doctor could help you with these things. I also used CBD oil for the anxiety until I got it under control.

      Everyone is different so you have to figure it out by trying different things but if something isn't working or if something is causing you problems pay attention. I also found journaling helped.

    • Posted

      Please don't apologise for having a "rant" as it is often good to voice your fears and get them "off your chest" so to speak.

      The amount of cobamalin (Vitamin B12) in a 1mg injection whether it's cyano, hydroxo or methylcobamalin is exactly the same.

      The rate at which kidneys remove B12 does vary considerably from one individual to another. When hydroxocobalamin was first introduced as the treatment of choice in the UK it was administered monthly for maintenance but then it went to two months and now it is 3 months but without any scientific background for the change - there was a study that showed that on average hydroxo is retained 2x as long as cyano but the same study also made it quite clear that there was significant variation from individual to individual and some retained cyano longer than hydroxo.

    • Posted

      You could always ask for an MMA test.

      Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

      The uMMA test measures the amount of MMA in the urine or blood.

      Elevated levels of MMA indicate B12 deficiency.  MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA  (uMMA) is the preferred test over the serum MMA.

      The new British Society for Haematology guidelines say: “Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobamalin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobamalin level”.

      I realise that the above may not apply in the States. 

    • Posted

      Hi Clive! Does that mean that if there is no raise in MMA or homosyctine then its likely not to be B12 deficiency? I have B12 at 280 but neurological symptoms or raise in other markers.. was vegetarian and vegan for 20 years and have three breastfed babies close together... thanks! 
    • Posted

      sorry, that meant to say have no raisin other markers but have neurological symptoms.. sorry to hijack thread,  have been following for interest and wish everyone all the best!
    • Posted

      I don’t claim to know nearly as much as clivealive, but from what I have read, MMA is very important and anyone presenting with neurological symptoms and a “low-normal” b12 level should have this looked at. I read that Japan raised their normal to 500! Too many people are being misdiagnosed or totally ignored because their levels are “within range”. It took a trip to the NICU for me to get this diagnosis because my level was 200. Looking back, I believe I have been deficient for at least 10 years and that doctors here and there were seeing it and getting it back up just enough to keep me going for a bit. It’s been a while now since I fell ill and I’m still wondering if I’ll ever fully recover. I am hopeful, but I cannot believe that something that should be routine in anyone with otherwise no reason for neuro symptoms should be checked for low b12 levels. I’m definitely going to have my MMA checked as soon as I can get insurance. Best of luck! :-) Oh, and if you didn’t look at the link I shared a few posts up on MMA, you really should! (╹◡╹)
    • Posted

      Put it the other way "MMA levels will rise if there's not enough B12 in the cell"

      If your serum B12 test was 280 that just records what is swirling around in your bloodstream not what it is at the cell level.

      The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

      This is in effect saying your doctor should be treating your symptoms not just looking at his computer screen for test results.

      Are you not now Vegan/vegetarian and did your children ever show signs of a B12 deficiency?

      Please remember I am not medically trained.

    • Posted

      I got this excerpt from another website..

      “Methylmalonic acid is considered to be the current “gold standard” measure of vitamin B12 deficiency. This metabolite increases in concentration when vitamin B12 is deficient. The enzyme methylmalonyl-CoA mutase requires vitamin B12 to convert methylmalonic acid to succinyl-CoA, important in cellular energy production; when vitamin B12 levels are low, the enzyme has a reduced activity and methylmalonic acid builds up. The test is a measure of functional deficiency. In patients with renal failure or poorer renal function, the test may generate false positives. Part of the increase in methylmalonic acid levels in the elderly is attributed to decreasing renal function. ”

      I will post another link that actually explains it more clearly (at least in my opinion).. Hope this helps! 

    • Posted

      And here is one more excerpt that might help narrow it down (and when I post the links they don’t show up right away)..

      “The Mayo Clinic Proceedings spotlighted the uMMA test as preferred because of convenience and sensitivity.41 

      In recent comparative studies, the uMMA test was found more sensitive than the serum B12 assay5 or the SMMA test.20

      A study found that patients with neurologic disturbances excreted larger amounts of uMMA than those without neurologic disorders42 and recommend the uMMA assay use to attenuate an important cause of permanent neurologic disability.43

      The uMMA test reflects tissue/cellular vitamin B12 deficiency and is the leading candidate as the "gold standard" assay for identifying tissue B12 deficiency.19,21”

      Maybe that’ll help narrow down / make more sense. :-) Goodnight! I’m up way past my bedtime. 

    • Posted

      Thanks Clive for your reply! No i started to eat 'happy' meat 2 years ago but stopped when it wasn't possible to get hold of it anymore. About four months later i started to have a bunch of strange symptoms like mild vertigo, seeing shadows, seeing stars when excersizing and being out of breath for nothing, aches and pains everywhere, excruciating pain in knees and back and a strange feeling in hands and feet of being stung by an ant or sometimes even bee.. i thought it was borelia as we live in an area with lots of ticks (south of sweden) so have had a wide range of tests including MRI which showed nothing.. I started eating meat again and taking b12 sublingually for 6 weeks and feeling better, some symptoms disappearing.. stopped b12 supplements for 3 weeks and slowly symptoms worsening.. which is what leads me to wonder if i need injections.. my husband is a doctor but is afraid to go against guidelines.. any advice appreciated. I understand your not a doctor but i wonder in honesty if many of the so called speciallists have true understanding of it ..

      i read 'Could it b B12' and felt strongly that it could be.. but its easy to just want an answer when one is lost.. 

    • Posted

      I have a history of bouts of extreme fatigue tand joint pain hat show 'nothing' on blood tests.. even a 6 month period with pins and needles in hands, and then feet.. but that was 7 years ago and it went away 'by itself' . . 

       

    • Posted

      Thanks Kailasmith00! 

      whats the difference between uMMA and MMA? (or is it sMMA and uMMA? ) or just usually called MMA ??  <3 

       

    • Posted

      MMA is a blood test whereas uMMA is a urine test.

      The uMMA test measures the amount of MMA in the urine or blood. Elevated levels of MMA indicate B12 deficiency.  MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA  (uMMA) is the preferred test over the serum MMA.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.