I was diagnosed with B12 deficiency back in January 2008. I had no other symptoms at that time except I was just tired.. I don't think I was officially diagnosed with pernicious anemia at this time.. I had one injection each day for 10 days.. I felt great.. after that I went from one injection a month to one injection every 3 months, but for the last 4 or 5 years it's been one injection each month.. fast forward 2016, I had spinal cord compression that was fixed with a three level cervical spinal fusion at the surgery everything was fine.. 2018 I had some weird twitching in my calfs, and started to notice that my balance was off occasionally, but I just ignored it ..Jan 2022, I started having weird tremors / twitching in my calfs, and I would wake up at night, shaking all over, and occasionally I would have this electric type, feeling go up and down my spine all the way from my neck down to my back that happened 4 or 5 times that I could think of.. started to have word find difficulty sometimes and issues with anxiety .. I also have been experiencing some tingling, burning, pins and needles, hands feet, arms and legs and other areas of my body. I was officially diagnosed with pernicious anemia in May 2022. By the end of 2022 I'm noticing my balance was off more and slight weakness/ (not clinical )in left leg and foot,Dec 2022 diagnosed with sleep apnea. Jan 2033 started having some short term memory issues . my walking gait seemed off.. April of 2023 left toe is weak, Sept 2023 I starting having shortness of breath issues, Dr says asthma. i'm still not convinced.. Same time my left hand is feeling weak, by Oct 2023 shoulders feel weak, by Jan 2024 right foot is weak and in Feb 2024 I notice my chewing on my left side is harder sometimes after I have a long day of taking at work. also my tongue feels larger.. March of 2024 hips are weak. Feb 2025 my shortness of breath gets a little worse, march 2025 my tongue, lips and roof of mouth feel like they are burning. I've been taking my injections since 2008 as prescribed by my doctor, I've also taken B12 supplements. During this 3 years and 3 months as I look back Ive had a lot of pernicious, anemia symptoms, In Jan 2022 I started trying to figure out what's happening to my body., I did mention to one of my DR i think it be B12 but they said my levels were fine.. Keep in mind I've seen five neurologist over the last three years multiple times and they all cannot find anything. I've had 4 or 5 EMGs and I have no clinical weakness.. I've seen the top neuromuscular neurologist in North Carolina that specializes in MND. I've been to Duke as seen their neuromuscular neurologist... I have seen the rheumatologist three or four times , they can't find anything either .. this has been going on for a while so I think it could have something to do with that my body has changed over the years and I'm not getting enough B12 thru injections??
I'm sure I left something out so please ask any questions that may help.
I know this is a long story but please give me your thoughts?
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JMACCDADDY
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My thoughts are that you should have B12 injections more often . I say this because it is a real possibility that that is what you need . Luckily , you cannot overdose on B12 ( unlike other vitamins and minerals . ) So , if the extra injections do not help , you will have done no harm . At the same time I would take a daily modest folic acid tablet( Vitamin B9) It works together with B12 . Your B12 readings may quite well be OK , but symptoms are the main criteria , not blood readings.
If your doctor will not give you extra B12 injections more often, do consider self-injecting. That’s what we have to do on this forum . You can inject by either the Intramuscular , or the subcutaneous method . It is possible to obtain B12 injections without prescription from Canada , and other countries . If you decide on that , you can get the information here.
Book called “ Could it be B12? “ by. nurse Sally Patchalok and her doctor husband Jeffrey Stuart ( American book) could be interesting for you .
It’s the middle of the night here in the U.K. I will have to look up information for you when I get up . Don’t want you to think that I’m ignoring you . I will get back to you with information .
Do you know what type of B12 you are having injected ? Is it Cynocobalamin, Hydroxocobalamin or Methylcobalamin?
Do you supplement with Folic acid or make sure that you that get plenty of folic acid in its natural form , when it is called folate and is found in green leafy vegetables ?
I've been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
Yes , I’ve been reading the postings on this forum daily since 2014 and this often happens . It’s called “Reversing out” ,It’s really upsetting , but don’t lose heart , Keep injecting and you will win through . It’s very hard for you , but please believe me , your persistence will pay off . Best wishes
Is it just an sign of general ageing? Oddly enough I have similar problems including Carpel Tunnel Symptoms that a recent surgical procedure has made worse. I was born in 1946 and so welcome reading other peoples comments. I receive my GP B12 every 8 weeks.
I think any trauma makes it worse. I'm 38 and have been injecting twice daily for at lease going on two years now. I was injecting way more at one point. Up to 5 injections daily. Anything less than 2 daily injs. and my symptoms immediately return. I feel I would probably do best with 3 daily injections, but to save money and time - two is the absolute daily minimum for me. So, 2 daily, if my goal is not to have recurring symptoms. Even at that I still occasionally get random twitching, muscle, spasms, lightning strikes in random places, aches, pains, heart palps, you name it; they kind of come and go from time to time.
Try self injecting daily for a month then see how you feel. You might need less frequent once your B12 levels are your normal not the doctors’ chart normal.
I do a subcutaneous injection most days. Sometimes I miss the odd one or two then I take a sublingual methylcobalamin or do an intramuscular injection the day after. I use a 1/3rd of a vial of Pascoe hydroxycobalamin, approximately 500mcg.
A German pharmacy. Pascoe has 1500mcg in 1ml vials. Cyanocobalamin is synthetic B12. It’s cheaper than but doesn’t work for me though some people can’t tell the difference.
Hey I started the injections Monday and have one each day.. definitely feeling better but it seems like the B12 wears off at some point?? .. Couple questions.. can exercise be bad for me during the period of "loading " ? How about alcohol?
I'm been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
JMACCDADDY, for me and many others exercise and alcohol were big no-no's for a long time. I am 8 years into SI-ing and have my jabs every 3 days (it used to be every other day). 8 years in I can drink in moderation. I can exercise: walking, weight/strength training, but any cardio still really affects. I've heard others say the same but I don't know the science behind it. I just know, that for me, anything that raises my heart rate too much for a sustained period, and repeated again within a few days, such as running, skipping, even fast walking, still brings a B12 dip and a return of symptoms. I have read that alcohol and cardio exercise deplete B12 stores.......
'm been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
You are still very early days in your SI recovery journey. Sadly you have had years of medical professionals who have no clue about B12, or the need for such regular injections. It is common to feel worse before better. As I understand it it is because the B12 is working to repair the damage and nerves are 'waking up', hence why you feel worse before feeling better. The recovery journey is, sadly, not linear. It is a rollercoaster ride, with many ups and downs. But stick with it, because with the correct treatment the ride is worth it.
And, like I said, exercise and alcohol were big no-no's for me for a long time. Even now, 8 years in, I cannot do cardio exercise, but I can walk for miles, and do strength training. I can tolerate some alcohol now, but I avoided it for a couple of years.
I am wondering if you have ruled out auto-immune thyroid with thorough testing ? As you may know PA is auto-immune and sometimes the two go together. Some of your symptoms do suggest low thyroid - especially when testing does not reveal anything significant. Thyroid hormones are needed in every one of the trillions of cells in your body - so it's important to have good T3 levels.
Sadly the NHS Thyroid Testing is woefully inadequate 😥 I am a thyroid sufferer and frequent the Thyroid Forum TUK here on HU. TSH - FT4 - FT3 plus Anti-bodies TPO & Anti-Tg are the tests needed. Private testing available on-line - happy to help. 🌻
No - I am in the UK. Click onto my username that will take you to my Bio. Testing companies are detailed on the main website of Thyroid UK. I use Medichecks as do many others on the Forum....
Ooops ! Just realised you are in the US - apologies !
'm been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
The only other possibility is that you may have type 2 diabetes as the symptoms are very similar to B12 deficiency. A blood sample can test your HbA1C levels which gives you the average blood glucose levels for the last 3 months. "If you have diabetes, an ideal HbA1c level is 48mmol/mol (6.5%) or below. If you're at risk of developing type 2 diabetes, your target HbA1c level should be below 42mmol/mol (6%). On this page:
diabetes.org.uk/about-diabe.... go through what HbA1c means, and why aiming for your target level is so important." from this source:
They are all good. Hydroxo is oft called a depot. Which means it is slowly released from the injection site. Hence its a good idea to try them all and see what is best for you. I use Pasco hydroxo 1.5 mg per ml and inject it into a muscle every third day. This saves me time, reduces injection scars and saves money.
I've had weakness in feet for about 2 years, no one would notice but me. do you think that weakness will go away if it's from the pernicious anemia if i keep injecting everyday ?
Hey I started the injections Monday and have one each day.. definitely feeling better but it seems like the B12 wears off at some point?? .. Couple questions.. can exercise be bad for me during the period of "loading " ? How about alcohol
If you are finding your B12 "wears off" you might need the shots more often at first. Some people need to inject more than once per day to keep a steady state. You might only need to do that until the damage has been repaired. I have PA and exercise a lot. I would say to listen to your body. Keep it at a level where you either feel good or just mildly tired for now. If it knocks you over and you end up sleeping the rest of the day, then I would listen to your body and cut back on intensity or duration short term. With alcohol, it might depend on how much you have. A little probably does no harm. Drinking large amounts is not good for people whether they have PA or not. My inclination would be to abstain for the short term to give your body the best chance to heal.
Extremely happy to NOT be in the US at the moment. I am Canadian and have my "Elbows Up". The US has been threatening our country. The cool thing about living in BC is that I can buy the injectable B12 over the counter without a prescription. I was so tired when I was first diagnosed. Now I am playing ice hockey at the age of 63, often with men, 5-6 times per week when I am not skiing. I have had 43 ski days so far this year. I was sleeping 16 hours per day when I did not know what my problem was.
Diagnosed in 2006. B12 deficient for several years before that. I had a family doctor who said she thought I just did not like teaching and refused to do any tests. That was my last straw with her. It took me a couple of years to get a new family doctor. It took him awhile to find the problem but he persisted until he did.
'm been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
'm been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
The vial size depends on how often you inject. The instructions say "Use withing 30 days of initial puncture". The 30ml is fine if you inject every day. I get 10ml and inject once per week. My pharmacist said unofficially that it probably would not hurt to use all 10 doses. But probably I should just use 4 doses and toss it. We are very careful with sanitizing and I think it is less risky at home than it would be in a place lots of people frequent. It only costs about $4 Canadian to get 10ml over the counter here. You can probably get the needles at a pharmacy in the US and maybe they would be less expensive that way?
thank you so much for your comments ., at this time I'm taking 1000 mcg/ which is 1ml per month and I inject at home as well.. According to what I'm hearing that's not much??
Some people on this forum inject every day and others seem to need several injections per day. We are all different. The best way to monitor things is by your symptoms. Ideally, all the symptoms will go away and will not come back before the next injection. I inject the same amount as you but once per week instead of once per month. My toes start feeling tingly after about 3 weeks.
thank you so much ., at this time I'm taking 1000 mcg/ which is 1ml per month and I inject at home as well.. According to what I'm hearing that's not much??
mind me ask how old you are? also a lot of folks on this forum seem to inject everyday compared to the once a month I was doing .. 1 ML .. so you're doing 1MG not ML? I think 1ML is 1,000 MG?
I've had weakness in feet for about 2 years, no one would notice but me. do you think that weakness will go away if it's from the pernicious anemia if i keep injecting everyday ?
Lots of us need injections more than once per month. Your doctor should know that testing B12 makes no sense and will not give meaningful data if you are getting injections. It would do no harm to do injections at least every other day for awhile. You have so many symptoms that could arise because of not enough B12. Once the symptoms are gone, you need to find a schedule that keeps all those symptoms at bay. If you are getting injections that often, it is more convenient to self-inject. There is lots of info on this forum about that. I hope you get feeling better soon! The fatigue, brain fuzz, and tingles are no fun at all. You may find that B12 gets rid of most but not every symptom. If there is one thing left (e.g. shortness of breath or something) it would give doctors more focus to try to figure out what is wrong instead of this whole mash of symptoms.
The ones you can obtain easily and are not allergic to. I can get injectable cyanocobalamin over the counter here (In BC, Canada) without a prescription, and one dose costs less than a cup of coffee. I have seen studies that hydroxocobalamin maybe be excreted more slowly. So maybe people need cyanocobalamin injections a bit more often.
Hey I started the injections Monday and have one each day.. definitely feeling better but it seems like the B12 wears off at some point?? .. Couple questions.. can exercise be bad for me during the period of "loading " ? How about alcohol
Hocky_player is right. The one you can get and are not allergic to.
Hydroxocobalamine you can get from Germany. Hard to get otherwise. But it is a natural form vs cyano is synthetic. I use cyano because it is easily available.
I've had weakness in feet for about 2 years, no one would notice but me. do you think that weakness will go away if it's from the pernicious anemia if i keep injecting everyday ?
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
His most recent article is an overview of B12 deficiency treatment.
Search for "Wolffenbuttel 2024 overview B12 deficiency" to find it.
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org have online talks about B12 deficiency.
I think alcohol depleted B vitamins in general as they’re water soluble, especially B1. We pee most B vits out within 24 hours of consumption. Lots online: pmc.ncbi.nlm.nih.gov/articl...
I've been doing the injections now since 3/17/25.. i've only skipped 3 days .. Some of my symptoms have improved but it seems so come and go and some of gotten worse.. wired.. I read somewhere this can happen is this true?
I've had weakness in feet for about 2 years, no one would notice but me. do you think that weakness will go away if it's from the pernicious anemia if i keep injecting everyday ?
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