I’m a 50 year old female - have had random Neuro symptoms for over 3 years - tingling and numbness in hands and feet, numb thighs, numb knee caps, pins and needles on my tongue; dizzinesss, balance balance problems - I went to my doctor at least 10xs Only the be sent away with muscle relaxers, anxiety meds and “come back in 3 weeks if not better” responses. They all happened at different times so I didn’t know it was slowly taking me down. In January 2020 I started waking up with pain in my legs - specifically thigh pain and then if moved to my feet (burning sensation) and the the pain got worse and was more intense each day u til it was pretty much constant . My calves felt like I had run a marathon yet I didn’t - BUT I do a lot of walking (3-4 miles every other day) and it became ,ore difficult each day 😶- legs felt like they were 100 lbs; and when I walked with my mom on the sidewalk, I started walking into her like I couldn’t walk a straight line! Doc still brushed me off so I made an apt wirh a Cleveland clinic (ohio) neurologist who ran me through MS tests (negative) and then diagnosed me with B12 deficiency due to “low normal” b12 but high MMA (methylmalonjc acid) levels. I went back to my regular doc who admitted she “missed it.” Very very frustrating - felt like I was slowly dying. The thigh pain literally was making me sick to my stomach . My Nero gave me gabapentin which Haas been a lifesaver for pain, and prescribed b12 injections once a day for 7 days, once a week for 4 weeks then once a month for a year today was my third day. I don’t feel any better yet but I know it will take time. I am just grateful for a diagnosis! I had more bloodwork today to check for intrinsic factor to see what the cause is and to rule out or diagnose pernicious anemia. This has been hell to say the least. Has anyone else experienced anything like this? I am praying for a full recovery. My husband and kids first thought I was just complaining and being a hypochondriac but I was feeling real hard pain and not being able to all or balance was downright terrifying!
B12 Deficiency is the worst experienc... - Pernicious Anaemi...
Yes, the symptoms were terrible for me too. I also have balance problems, I know exactly what you’re talking about not being able to walk a straight line. It took 4 years for me to get a proper diagnosis, the doctor also told me I had anxiety! I did but they weren’t interested in looking for a cause, they just wanted to give me pills. It’s totally normal to not have relief during the loading doses, but afterwards you should start feeling better. Really good you were able to get the problem addressed!
How long have you had this and how is your treatment going (how long did it take for symptoms to get better?). Thx!
Just keep going with your treatment. It takes alot longer than I was expecting but very different for everyone it seems. I got alot worse before better.
I'm glad the gaberpentin is helping you.
I also had a laye diagnosis.
Told stress. Tried to put me on antidepressants more times that u sn count. I'd not been tk the Gp for 7 years before theses symptoms stated. Tou would think that would ring alarm bells!! On no medication ect
I started going as Lego falling over.menopause gkasses but not given a blood test.
Now i realise so odd of me not to challenge this. Proper fatigue creeps up tou csnt think straight. I spent a fortune on so many different glasses . I p ly needed a blood test with b12 on it.
It's a disgrace
I wish you well
IT IS A DISGRACE!!!! Glasses? Antidepressants? Gimme a break! Why are GPs so clueless on this?!! I am so sorry for your suffering for years. I suffered in random ways for about 3 years and when the walking challenges and balance issues were telling me something just wasn’t right. You have to be your own health advocate cuz docs just miss so much!! Best wishes to you ❤️
What you describe HopetoB12better is pretty much par for the course.
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.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 48 years.
I wish you well and hope that you will find out the cause.
Thank you so much for your informative reply! I like the untuned radio analogy. I get it! I definitely think this is what’s happening as my feet are burning pretty bad (one of the many ailments I had and went to the doc for and was brushed off)) - I haven’t had it for a little while but it came on after day 2 is the initial shots. And WOW - 48 years??? 🥴🥴🥴🥴. How have you managed this whole time (shots? How often? PA?) and god bless you!!!
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, list of B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.
I'm not medically trained.
Thank you for the info!! I am craving information on this and I am so thankful for this forum!!!!!
Have you read the book
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)?
Very comprehensive with lots of case studies.
I knew I was on the right track after years of ill health after I read this.
She and her husband also set up a website .
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
I cried when I read this book as it was as if I was reading about myself.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
One of the authors is a retired UK GP so may be some info may be UK specific.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
Has some overseas members.
There is a helpline number that PAS members can ring.
Overseas members can use the online contact form.
B12 Deficiency Info website
Stichting B12 Tekort (Dutch website with English articles)
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Next link mentions a B12 support group on Facebook.
Films about B12 deficiency
B12 article from Mayo Clinic (Clinic in US)
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Yes, even a much longer hell. Intrinsic factor test could be off by recent injections.
I think you are lucky Doctor admitted she missed it. I went to best places with enormous legal departments and what they do is never admit their mistake and keep altering your records. Sending you love. Get daily self injections and see them as little as possible.
They had a good researcher at Cleveland. Write those people many thanks you letters. Get RX for daily injections. They’ve done enough damage. And good job!
Yes I agree it is rare I had no apology for not doing the most basic of bloods 3 missed opportunities
My daughter did get an apology from her Gp for never testing b12. but it was too late as damage was done.
Now same Gp ignoring s massive weight gain and ferritin of 10
He is well respected!! Too many fingers in tok mang pies I think. Probably missed as in normal range but dies keeo weighing her!! And suggesting exercise ske can't do without passing out
Needed to. aee another and another I think n or referred to more skilled doctor.
It’s so frustrating that the docs just brush you off. I was feeling like a hypochondriac every time I was sitting in the doc waiting room - they called my name and the nurse girls would look at me like “here she is again - can she just get it together?? What a crime! How are you doing otherwise? How long ha e you had it and what is your injection schedule and how are your symptoms? Thx for your reply. Wishing you the best....
I'm struggling at present.
I'm trialling weekly b12 I je tio s
Main symptoms are light sensitive noise sensitivity. Ladt night some odiot set of fireworks that were made I expect t for a big display across a river or something. I was asleep and woken by what I thought was an explosion.
My whole nervous system effected
Tinnitus . Shooting pains in my head. Coukd by walk. Ect
I imagine what many shell shocked soldiers are left with. A short time for a bit of so called fun a night of helk for me.
The noise level was incredible
Weve had fireworks with clapping to support workers but they different.
Glasses clamped like a vice
Muscle aches cramps
A vestibular disturbance
Some days I can function for a few hours. I di the food shop. Walk half a mile. Cook ect
But am in bed 12 hours not asleep but to keep still and get my head a bit relaxed before sleep nuchal muscles continually contract??
My profile tells my story.
You did ask lol
Never a short answer these days
Believe in yourself.
Even if not believed ar times.
"I was feeling like a hypochondriac "
I understand what that is like...I got diagnosed with hypochondria.
"Intrinsic factor test could be off by recent injections."
Actually, very high levels of serum B12 can affect the IF antibody test - by producing a false positive. So you don't need to worry if you are on injections, you'll just be more likely to get the result that you want.
Thanks for the tip about IT test and how it could be skewed by recent injections. So you tried legal action and they altered records??? SO ILLEGAL!! Unbelievable. I really like my doc but I am still livid at how long I suffered and it could have been determined with blood tests. What the heck???
I huffed vitamins to stay alive. There was nothing about b12 deficiency in the 30 years of health literature I read.
I was finally diagnosed in 2012.
No there never was any threat of legal action. I just wanted my medical records updated. But I had been through some 80 doctors when I patched in a helpful pathologist. Your doc is a hero in my opinion to admit her mistake—it helps with the psychological healing.
I had feet, spine board, pins and needles, numbness, and shortness of breath reported and recorded back to the early 1980s.
So sorry to hear you are suffering so much. That is awful that you were not diagnosed until lately. It really puts you through it. Did the blood tests come back as positive for Pernicious Anaemia? That is altogether a different thing. Low B12 can be treated orally, but Pernicious Anaemia is when you need injections for lift, as the intrinsic factor in your stomach does not work and anything taken orally will not be absorbed. I do hope you start to feel better soon. Good luck and do not be afraid to come on to the Forum as we have all been through it and can help each other. Briarhillcat.
Thanks for your reply. I am being tested for PA as we speak. I am really wondering about the fact that I was recently treated for SIBO (small intestine bacteria overgrowth) which I have just read can cause the bacteria to eat all the b12 before your body can absorb it. I took probiotics for 2 months and the reason I suspected something was because I had serious stomach bloating for like a year and doc said this will take care of it. If this is the cause I am hoping that the b12 deficiency was caused by that and I will be ok long term. This has been awful - line I feel like I am stuck in hell. 😢. Best of luck to you! How are you now and what is your injection schedule?
Intrinsic Factor Antibody (IFA) test
Parietal Cell Antibody (PCA) test
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
UK GPs often don't seem to know that it is possible to have Antibody Negative PA.
I'm guessing you are not in UK so don't know if doctors in your country are aware of Antibody Negative PA.
You are correct. But I hear stories of hematologists with no idea what are intrinsic factor antibodies or parietal cell antibodies or running the test just after injections.
I will attempt to bring a review of this forgotten disease to a great thinker/communicator.
It may be too expensive to administer shots at practices. I do fine with subcutaneous injections. Have great doctors now. Including a great GI.
It could be something to do with bacteria, but you need to find out if you have Pernicious Anaemia, because then you do need injections. Low B12 is different and you can take tablets and a good diet for it. It is worse because of the Covid, as it is harder to get answers sometimes. My surgery said they were stopping my injections for a year. (Lots of people on here have been told they were not getting injections - but not for as long as a year. A lot of people really helped me and I am now self injecting and getting on well. I did my first one a month ago. Sometimes I know that blood tests can show your B12 levels are good, but it can be wrong sometimes and injections are still needed. That happened to me. But just remember we are here for each other, so do not hesitate to get in touch. Let us know how you get on. Good luck. Briarhillcat
How do you get the meds and syringes to do it yourself without a doc?
I think you are in the States. So am I. My suggestion is that you find a good naturopath or functional medicine doctor. They can supply you with everything you need to self inject. Or if it’s better for you, some of them have “shot bars” in their offices where you can get injections daily if you want. They will not question your sanity. They are doctors but they treat patients as holistically as possible. Mine literally saved my life. I was seeing one of the “best” hematologists in my area and it still took years to be diagnosed with PA. She refused to allow me to have more than one B12 injection a month. Even though I was sleeping almost all of the time, had difficulty walking, had profound brain fog, blurry vision, and extreme anxiety. She prescribed anti-depressants and told me to “eat better.” Give me a break!! I just needed more B12. Unfortunately, functional med docs can be expensive. Good luck with everything. And be patient. Recovery can be slow and somewhat tumultuous but you will eventually start to feel better.
You’d get the b12 ampoules from pharmacies in Germany then you can order the needles etc from U.K. x
It’s crazy to have to go outside the country for help!! Omg!!
Yes it is but I’ve done that many times for various things.When I was on hrt I used to buy otc in Spain.
It’s a whole lot cheaper than trying to get injections here privately,there’s tons of posts explaining the options so type it in the search box and have a read through when you feel like it,loads of great advice from people who’ve been doing just that for a long time.good luck
Candida can cause vitamin deficiencies and many more symptoms. It is yeast that lives in our body. A candida cleanse requires a strict diet and herbs to regulate it.
Are you saying thrush can cause problems? I have been having the injections and I believe I have ended up with thrush now,its a never ending list of problems, I have been prescribed cream to get rid of the rash, but my doctor isn't interested in my B12 problems, as far as they are concerned is that I'm getting my injections on a 3 monthly cycle and that's all that matters to them,even though I have been getting more problems, like I have ended up with constant tinnitus, and the pins and needles are absolutely driving me insane in my feet, the problems that I feel I have ended up with due to the doctor not even increasing my cycle to a 2 monthly dose is a failure, and it would be an admittance on his part if I could prove that I now have more health problems than before,even though I mentioned all these problems on many occasions,I do have to take omeprazole, so possibly that is causing the thrush, but,it is a bit of a guessing game as the dentist noticed a white growth type rash in my mouth, and I have had a rash in my groin area, so I'm pretty sure it's a thrush rash, and the cream has started to heal the area up,but why didn't the doctors prescribe me a tablet to clear the whole areas up,if that's the case, unfortunately it was all done over the telephone due to the virus situation, i have always had stomach problems over many years, but getting thrush is a first time for me, if you could shed any information I'd greatly appreciate it,sorry for jumping into another conversation, thanks again.
My husband was found to be B12 deficient after several months of taking high strength omeprazole. Apparently it blocks B12 absorption.
Omeprozale made me really sick and I later found out that PPI’s can stop absorption of B12. I was on it for about 4 months and I got much worse.
Yes, I'm on it for lifetime due to a internal stomach bleed, and suffering from stomach acid, so its not much of a choice I'm afraid, its the lesser of two evils I suppose, I have always had stomach problems ever since I was a younger man,and even had ulcerative colitis for a few years on and off, so its probably this and that and other health problems might be my reason I'm B12 deficiency ,its just trying to convince the doctor to acknowledge the symptoms is the biggest battle,thanks for your reply.
Hi, sorry to hear of your symptoms but I had this too. I started with more fatigue for a few years, and then the last two years have been severe neurological symptoms and depression. I thought I was going mad. I felt like I had forgotten how to walk (I used to be a runner) and also just felt suicidal a lot. For me 80 % of the symptoms stopped after a week of injections. I do self inject and will do as long as I need to. Hope you improve too!!
Hi HopetoB12better, I am sorry you have been feeling so bad for so long; your experience reflects many of us on this forum. I had almost exactly the same experience and timeline as you, same symptoms and same impact on life; Now nearly 3 years after diagnosis I am ( still slowly) getting better at managing my symptoms. I have 8 weekly gp surgery injections and self inject 2 weekly in between ( this was scary but I had help and support from the people here (I am so grateful for this). I was recently found to be very slightly low in vit d and zinc and taking supplements of these helps a little.
Recovery seems to take a long time but along the way you should find plenty of really helpful advice and support here. I really hope you being to feel better soon.
Yes, by the time I was diagnosed, I could barely get out of bed and had to grit my teeth to do a simple task such as washing the dishes. My Doctor in the UK told me I felt like I did because I didn't have enough fun in my life after having my twins (after being told I couldn't have anymore kids). It was only when I moved to India and asked my Doctor whether it was normal to want to lay down and die I felt so fatigued that she tested for B12, Vit D levels were low too. I was lucky, she had a special interest in B12 deficiency. I'm so glad you got a diagnosis too! I'm 51 and five years after my diagnosis am running between 5 & 10 Km a day. Onwards and upwards for you! ♥️
Can you share your injection schedule, with your running.
Hi, after trial and error, I've settled on a weekly injection. I also follow an intermittent fasting regimen to control inflammation from microscopic colitis...
Thank you Karen. Appreciate it.
Many of us have been in a similar situation as you have before diagnosis and some of us had even more symptoms.
Now you can move forward, get the correct treatment regime going and get on with your life. It takes time perseverance and patience but read up on it, at least you now know what you're dealing with and that it can be treated.
I lived through the same situation as you. I complained to my doctors for years about being extremely tired and dizzy. They all patted my hand and told me I was just working too hard and under too much stress. When my toes went numb, my GP sent me to a podiatrist who prescribed shoe inserts. It was at this point that I started doing my own research. It's been two years since I started B12 shots and I have to say the first year was up and down, but I feel really good right now. I thank God that I finally diagnosed myself and didn't continue to meekly accept my doctor's analysis of my symptoms.
BTW, I am a very vocal advocate for universal B12 testing. Because of my annoying personality my daughter and sister were both recently diagnosed with pernicious anemia. My daughter also has two friends who were also recently diagnosed with B12 deficiency. I think it's a much more common problem than the medical community believes.
Shoe inserts??? Why are doctors so blind to this horrible and debilitating condition?? I am shocked!!! Well good for you that you did your own research. It’s too bad this disease doesn’t have more light shed on it. I feel for rose who are struggling for a diagnosis and it’s right under the docs noses. Maddening. Be well!
Happy that you finally got your diagnosis.
And I think that is a good sign that your doctor admitted that she missed it. She probably won't again, because she openly admitted responsibility. Not good for you. But good for those who come after you. That is a good part of my battle, going up against my GP, pushing at her - when I have the strength - for others.
The not being able to walk in a straight line made me laugh. I know it is not funny but it brings back memories of one of my friends forever saying, "What is wrong with you? Why can't you stay on your side?"
I just chalked it up to a meandering brain. Too deep in thought. Or not paying attention as I rambled in conversation.
It wasn't until I came here, after diagnosis, that I realized it actually had a name!
I had about 30 symptoms. I would say about 80% of them are gone. The rest have been a rollercoaster. But I am hopeful.
The walking, still some gait issues, is emotionally hard for me. I can't wait to feel like I am bouncing around the city again. Will keep the hope. Hope is everything.
When did you start the medication for SIBO? Did they give you a timeline for that?
All the best to you with everything Hope.
I had to laugh also about the “staying on your side.” I kept bumping into my mom and she just thought I was being my clumsy self! But as I think back through the years, I wasn’t always clumsy so it was definitely slowly coming on a long time ago.
Also on the SIBO - this was about 4-6 months ago and I took probiotics for 60 days. One reg doc said go off of them because they aren’t needed forever bu the GI who prescribed them said to stay on them indefinitely. I can’t win! 2 answers for everything! But it did stop the severe bloating I was having but now I wonder if that is a sign of the intrinsic factor problem. Like can it just happen?
Good to hear 80% of symptoms gone. Wow
What injection regime has suited you?
First, think of you regularly Nackapan. Love sent. And I genuinely mean that. I am continually hopeful for you.
Hard to answer, because I made some changes lately due to stress levels over some personal issues. So I will probably change back as soon as that situation dissipates.
So here in Canada it is loading and then once a month (cyanocobalamin)
Early on I decided to self-inject and follow the NICE protocol of every other day, if one has neurological symptoms. Until one feels no more improvement.
I chose that because I could feel a ton of symptoms trying to come back waiting for the month. And a couple of countries have similar guidelines, so I went with it. And didn't look back.
Starting in late October with that protocol. By February, I felt that there were no more improvements and started to head toward the monthly doctor's office shot.
But I went back to twice a week when I could see cognitive issues suddenly returning, I believe due to stress levels (my naturopathic doctor strongly believes stress can impact b12 levels)
So here I am right now, on this self-injecting schedule. And just changed from cyanocobalamin to hydroxocobalamin thanks to the generosity of a member on here. Not sure if I will keep it up due to budget as cyanocobalamin is cheap as heck here in Canada. I swear injections are less than pills here, or at least similar.
And the exercise thread was an eye opener. And has made me think about my choices.
I totally believe stress depletes b12 .
Also the menopause.
Those two things unfortunately hit at the same time. Like you if I remember rightly I wad caring for a poorly mum and daughter at the same time. Full on.
I am hopeful too. I've had a real dip again . I'm also self I jecting and having a monthly IM at the surgery. So weekly now.
It will be interesting how you get on with Hydroxocobalamin. I've only had that.
Hope your stresses get fewer or resolve.
My mum has more outside help now
My daughter has actually been better off through lock down as partner working from home. Si I worry less . At least a proper diagnosis for her now. .
Yes stress eats b12.
My friend in Canada sees a natuopath too.
Hope it works out for you. T C
Wanted to share with you I had a very intense situation during loading. Probably between my third and fourth shot. I had had severe debilitating nerve pain for over a year. I didn't think there was worse pain in the world. I was wrong. This situation was a horror show. It was like someone was tasering me every fifteen minutes, for about sixteen hours. I could not even sit. I had to literally pace for sixteen hours! Crazy I know.
I don't want anyone reading this to not get medical help for themselves if need be, because I had this situation. But I am 100% confident that the horror show was actually a healing situation. My nerve pain left that day. Tried to return a couple of times, but never like it was before. Poof. Gone.
I believe my body was regenerating, or whatever the appropriate word is for it.
Writing this out for everyone just starting out.
All the best.
Wow that is so crazy about the taser-like pain! I had extreme thigh pain and hip pain - not like joints but more like the outside skin part. I would be so nauseous because it hurt so bad and there was no letting up. It was like constant bee stings!! I am about to have dose 5 today. I feel worse today then I have. Leg pain coming back and super tired. Ugh this is absolutely awful. Be well.
"about the “staying on your side.” I kept bumping into my mom "
Might be worth looking into whether your proprioception sense has been affected.
Proprioception is awareness of where your body is in space.
Tests to check proprioception should only be carried out by a doctor at medical premises due to risk of loss of balance.
Two tests that can check proprioception sense are
1) romberg test
2) walking heel to toe with eyes closed
Videos of these tests on Youtube. There are other proprioception tests.
I had mild proprioception problems. I used to lose balance when it was dark, my eyes were closed or my view of surroundings was blocked.
I used to fall off the pavement (sidewalk) if someone walked directly towards me and I couldn't see ahead.
If you have balance issues and other neurological symptoms, might be worth asking if your doctor can refer you to a neurologist who can carry out neurological tests.
Long term B12 deficiency can sometimes lead to spinal problems which may affect balance.
Neurological Consequences of B12 Deficiency
PAS news item
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
I am not medically trained, just someone who spent years trying to find out what was wrong with me.