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
julie59341 molly54321
Posted
I have similar issues and am scared by my results. I have had some nerve pain and my B12 levels are low normal (they just did serum levels not MMA). It started out as twinges of pain in my extremities that comes and goes. More annoying than anything. I got a B12 shot and two days later my arms and legs were feeling numb. Now I just take methylb12 and some other supplements to help w the deficiency (I have been a vegetarian for over 10 years) and everyday I have worsening symptoms. I don't know if I should blame the b12 or something even scarier. Now I get tingling in my hands and feet. Burning sensations. Twitching all over (feels like popcorn going off!) and a restless sensation/crawling sensation that comes and goes in my arms. I am terrified at what's happening to me. My brain MRI was normal. I am seeing a neurologist in hopes for some answers but I'm freaked out.
clivealive julie59341
Posted
What you are experiencing is "par for the course" for low B12 levels and can largely be explained by the fact that you are vegetarian.
B12 can only naturally be obtained by eating red meats, fish, eggs and dairy products so the normal "reserves" stored in the liver get depleted if your diet does not include any of the above.
There are other causes, like gastric surgery, extreme exercises, exposure to nitrous oxide, contraception pills, stress etc
I am not a medically qualified person and you really need to persuade your doctor to give you a trial run of B12 injections according to the BNF guidelines:
Treatment of cobalamin deficiency
Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,
Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks.
The BNF advises that patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.
However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment.
Make a list of your symptoms and don't let him fob you off by saying your "B12 levels are low normal" - he must treat your symptoms.
Mention all this to you neurologist
False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
I wish you well for gthe future
Angel2013 julie59341
Posted
Hi julie. The symptoms your having now is the same for me. I have been having B12 for years. Had pins and needles in the beginning. Nothing for years. I have not eaten wheat or gluten for years. Eggs, nearly all dairy I have problems eating. But the way you have just said about the way you feel. Its the same for me. I don't get the twitching but the feeling of something like crawling in my legs, But like a dragging sensation down my arms. Yes it is scary as I have had all this none stop now for 2months. I realy do hope we all feel better soon. This is so not nice. Take care. A
clivealive Angel2013
Posted
You say "I have been having B12 for years." do you mean youv'e been having the injections or the symptoms of B12 deficiency?
I am not a medically qualified person, but If you are having the B12 injections and are still getting the symptoms "none stop now for 2 months" I think you need to go back to your doctor and ask for an increased frequency of injections.
Sadly most GPs seem to have this "one size fits all" attitude without taking into account their patient's height, weight, metabolism or lifestyle etc., instead of treating the symptoms that you should list and present to him
Also, ask to have your folate level checked as this is essential to process the B12.
I wish you well.
Angel2013 clivealive
Posted
kevin20179 clivealive
Posted
hi, i had my last dosing jab on 19th April and require one every 3 months thereafter. Just had my first 3 month 'top up' on 19th July. Still have a feeling of weak legs, although i can walk fine. Strange sensation in the hands too, difficult to describe. Have i benefited ? I'm not sure as i dont know how long these things take to get right. I appreciate that B12 affects the nervous system and nerves are a funny thing
clivealive molly54321
Posted
How long have you been having symptoms of B12 deficiency and do you know the cause?
Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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 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.
Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.
Do you "see" yourself in any of the above?
I am not a medically qualified person but as I understand it the injections should ideally be into the muscle not just under the skin.
It is not uncommon for things to get worse before they get better and it may be several months before any real improvement can be felt and the damage is being repaired.
Make a "diary" of your symptoms - this will help you identify where and when improvement has occurred.
This is not a "magic wand" cure and it may be months before you get "back to normal".
Have you had your folate (folic acid) level checked as this is essential to process the B12 especially now you have started the injections.
Worrying about it is the worst thing you can do as stress simply uses up B12.
I've had P.A. for 45 years and I'm still "clivealive" at 75
I hope this helps put your mind at rest and I wish you well for the future
Angel2013 clivealive
Posted
clivealive Angel2013
Posted
Yes - Chrones/Cealiac often misdiagnosed - the possibility of B12 deficiency disregarded when (even if tested) serum b12 test results come back as "Normal"
Angel2013 clivealive
Posted
clivealive Angel2013
Posted
I'm not a medically qualified person but if they are testing your serum B12 level again it will really only be of use if it comes out low as you are having the injections.
As to your high folate level, ideally this should be being "used up" processing the B12 - unless of course you are overdosing. Whatever the cause it will need to be monitored continually.
I take a folic acid 400µg tablet every day plus it is to be found in my breakfast cereals and also green vegetables such as broccoli which I eat 3 - 4 times a week, yet my level in March was only 18.2 ng/ml in the range 3.10 - 20.5 ng/ml and "flagged" as "Normal"
Angel2013 clivealive
Posted
clivealive Angel2013
Posted
Let's hope your doctor "sorts you out" this morning.
I wish you well.
Angel2013 clivealive
Posted
GreeneyedB clivealive
Posted
You forgot to mention people who have had pelvic radiation for cervical or anal cabeers are usually b12 deficient because of the damage that is done to the terminal ileum by radiation. I found this out the hard way! Currently a month into my b12 injections, 16 years after surviving cervical cancer. I'm a massage therapist and thought the nerve symptoms in my hands and feet were due to working too much, what got me is the major brain fog, severe fatigue, and finally the dizziness!
clivealive GreeneyedB
Posted
A very valid point and perhaps it should be added to the list of "generalizations".
It is obviously early days in your treatment yet but are you feeling any benefit from the injections? How low did your B12 level go before you were diagnosed deficient?
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.
Do you know what your Folate level is?
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years. It was 13 years after gastric surgery to remove two thirds of my stomach before I was diagnosed so goodness knows hay depleted I was in B12.
I wish you well