I finished my b12 injections just over a week ago. I am still unsure if I have anemia or just a deficiency at the moment. I have been experiencing some worrying symptoms that I cant deal with anymore.
The b12 shots cured most of the things I originally went to the doctors for answers for but some are reappearing more powerful. I had full body twitching besides the face for the most part around half way through my injections and are pretty consistent (didnt have these before). I have a lot of pain in my arms but more in legs, light headaches before going to sleep, although this could be through playing video games. However, this is a regular thing for me and I have never had headaches from screens really.
But the things most worrying me most is things like some sort of facial paralysis. I feel like its harder to speak and my lips are moving in random ways, not following the words Im saying if that makes sense. Also, constant shakiness on some days in arms, down through my spine and into my legs. Whiles typing this it feels like typing with cold hands, the co-ordination loss associated with frozen hands.
Im sure if missed a couple things, I have read a lot into this but Im getting increasingly worried if its something that I cant fight against. Im worried its mnd or something like that which sounds crazy but my minds playing into it, sort of like theres no escape anymore. Im 18 and doctors have no answers for me, just "call or see us again if it gets worse". I can respond to any questions if you guys have any, if anyones experienced anything like this, please let me know. I just pray its nothing life threatening.
Thanks
Written by
jacobwentworth
To view profiles and participate in discussions please or .
You probably need to continue with the B12 injections , by the sound of it . Have you asked for that? If you have P.A., or an absorption problem, then you need injections for life . If you find it impossible to get them , you could self-inject like most of us on this forum .
Now if it were mnd , the injections would not have helped . Sounds like very nasty B12 deficiency symptoms ( they are many and very varied . B12 deficiency affects the myelin sheath that protects the nerves ). Now we have nerves all over our bodies . The possibilities are enormous . … Get your B12 injections reinstated asap . and please stop worrying Best wishes .
P.S. ANXIETY IS ONE OF THE MANY SYMPTOMS OF PA/B12 DEFICIENCY . !!!!!!!!!!!!!
How to diagnose Pernicious Anaemia by elimination when you have B12 deficiency symptoms .
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .
PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY.
thank you so much for your help, I really appreciate it. Looking back, my original post seemed like I was depressed lol. I have had phone calls with doctors that arent willing to continue treatment despite my pleas. Whether that means I have to source it myself is something I will find out soon. I have another scheduled appointment in 2 weeks, guess I will have to try to put up with it for now. I will definitely read into your suggestions. Once again, thank you so much.
Hi Jacob, I'm a gamer and had/have very similar symptoms to a lot of yours. I did not have facial paralysis though. It sounds like your nerves are waking up. I had no numbness at first. But once I started injections, a few weeks later, I did start getting numbness in feet and tingling. Things did get worse and now are starting to subside. I am only 5 months in so I am still experiencing new stuff. I lose my words. Get very tongue tied. I know the words, but they just won't flow out of my mouth with ease. It can take me a very long time to compose an simple email when I am tired.
Years ago, before PA was diagnosed, I was having serious mental problems with creativity. I am a designer and I could not do my job. I couldn't think straight or be creative. I am very creative or used to be but I seriously lost it to the point of fear. I am getting some back but I used to be very creatively sharp minded. It was very very scary. It took about 6 years after this came on to be diagnosed. I had to keep it to myself because people would think I had a mental issue. No one understood. They said it is stress. That's the big fall back cause. Everything is stress or depression. and depression is a large part of PA. It does mess with your brain. Some people get paranoid.
As a gamer, I used to be able to play Mario Cart Rainbow road, no way can I ever play that again. I get vertigo so bad, it put me in bed for 5 days. I now play elderscrolls and neverwinter and Zelda was awesome and I had no problems with Zelda, but I have to limit my screen time. Moving around and turning makes me nauseous. First shooter games are impossible for me to play. I have to see myself at a descent distance so I my brain doesn't freak out. I start to sweat and then my stomach starts to get queasy. My head gets tight around my eyes and I can feel the mental stress coming on. When that happens, I start to lose my words. When I watch the news, the ticker tape headlines that scroll across the bottom make me dizzy, but that is getting better. Patterns in carpet make me dizzy. Especially when tired. Lights and sounds are too much for me sometimes. Especially light! I get very overwhelmed when too much sound is happening. Like sports casting on the news. all the noise in the background as they are talking drives me crazy. Never used to. Weird things. I actually get very agitated and impatient especially with confusion around me. sitting in a dark room with now sound is heaven for me.
So I would say that your symptoms are normal. PA definitely messes with nerve function in many ways. I also have a tremor in my hands and I feel it in my legs too. It is supposed to get worse before it gets better. I am slowly getting better. It is very slow going on somethings.
And if you feel like your symptoms are coming back before your next injection, that is probably true. How often do you get injections?
Most of us here self inject, because we can't wait a month. I inject every day. However, I am trying to see how long I can go before I need another injection. this is my second day without one. Its just an experiment but I want to try and inject less often. It's going well. I do feel trembling in my hands. My brain is Ok for now. I was a little spacy when I woke up but now that I am awake, I am doing OK.
Please don't hesitate to ask questions here. You are so young. I hope you have family to go through this with you. We are here all the time. This family is so helpful. they really saved me here at this forum. I was so scared! But they all reassured me and they were all right.
You will find that doctors do not know much about this. They are very limited and they choose to stay that way. Very stubborn. so if you want a real answer, come here. I trust them here more than any doctor I ever had. These friends here have seen it all and been through it all before me or you and they know. When I started 5 months ago I knew none of what I am saying to you now. I have learned so much. Still get scared. Mostly about my brain function, but I believe them when they say to give it time. it an take a year, some even say two.
If you are still in school or studying, that could cause you some problems with reading and retaining what you read. Bright fluorescent lights are terribly disturbing to me. If that is a problem and you are in school, you might wear your sunglasses. It helps me. I can't deal with numbers. I get confused and overwhelmed. I had to fill out some financial info on Etsy for my bank and I was getting extremely frustrated because it was too much for me. And it was quite simple, really.
So I think you are experiencing some normal stuff. Everyone is different, but also, very much the same. Hang in there. don't get yourself worked up, come here and tell us what's happening. We will help you.
You are young so your symptoms should reverse well. you may have lingering nagging things, but you have a great chance of living a normal life as long as you get your B12.
I don't know what tests you had done, but b12 is not the only test and is not that reliable just because doctors vary on what THEY think is low. and some other things could mask anemia and b12 levels. and you do not have to be anemic to have PA. So additional tests should be run like
b12/folic
MMA
IFAB this is an important one. This will tell you if you have intrinsic factor, the protein molecule that b12 binds to in order to be absorbed. If this is positive, you do have PA. No doubt.
thank you so much for the detailed reply! Im scheduled to have injections every 3 months from now, I finished loading doses and found myself suffering after a week. I was just so stressed out which is really out of character for me because I just want normal health conditions within life. I was in hospital a couple years ago and just got tested on again and again, then sent me home with "possible dehydration" when I collapsed playing sports. Ever since then its been downhill, but I just got unlucky as it was broken bones etc. no underlying condition luckily. Im going to talk to the doctors about other tests and the future of my injections. I dont know how expensive b12 shots are but moneys tight at the moment, I will figured things out I guess.
This response has helped me out so much, thank you for taking the time to help 🙂 Stay safe
It is a good thing you came here. We can save you decades of suffering with misunderstood doctors. They do not know much about b12 deficiency or pernicious anemia and many refuse to learn and are very dismissive and egotistical so they are not very open to suggestions. Many of us went decades (38 yrs for me) being misdiagnosed and misunderstood with things like depression, stress, hypochondria, and many illnesses that resemble PA symptoms. Like multiple sclerosis. Do you know if anyone else in your family has any kind of symptoms? What about any grandparents, aunts or uncles. Some people are adopted so they won't know this.
Are you a vegetarian? I know you collapsed which is very serious, but what tests prompted the docs to give you B12 injections? I also had a habit of passing out and it was always blamed on dehydration. which it could have been too.
Every 3 months is a very long time. This is where all of our problems lie. all of us are in a frequency nightmare. How often we need injections. Everyone is different. Many are in financial hardships and depend on their doctors to inject them and they are forced to wait and suffer until their next injection. So this is a serious reality I'm afraid.
You are young so I am sure money isn't flowing into your life well. I spend about $175 a month on B12 and syringes. I inject daily. If you don't have to, the cost would be less. I use cyanocobalamin. I get it from Canada and have it shipped to the US. Shipping is $13.00 and included in that $175. Others in UK I believe use Hydroxocobalamin and many seem to get it from Germany. They can correct me there if I am wrong. What I can say about money and B12, and being young, there are many things you would rather spend your money on like video games and clothes and all kinds of great stuff. But if you spend your money on anything, let it be B12 first. This is a matter of the quality of your life and your future quality of life. Without B12, video games and going out with friends will be much harder to enjoy. Life is harder without b12. You need it to make red blood cells and feed your organs, muscles and brain oxygen. It builds your very DNA. It also protects a very important thing called Myelin. It is a protective coating on your nerves that protects them from short circuiting and being exposed. Exposed nerves are quite debilitating.
You can have B12D from vegetarian/vegan diet, in which case, if you haven't done any neurologic damage, you can take B12 supplements orally and be OK
Or you can have Pernicious anemia which means you can not absorb B12 no matter how much meat or animal by products you eat. That is due to no intrinsic factor (IFAB test)
PA can be hereditary, in which case, someone in your family may have suffered from symptoms and no one may have ever known. So you should look at this symptoms site and see if you can recollect anyone else in your family has any of these. b12-institute.nl/en/symptom...
If you think you have other family members, tell the doctors. It helps to get them to listen and maybe they will give you more frequent injections. My grandmother died of stomach cancer, and I found out two days ago, she used to get B12 injections. 5 months into this and no one told me that. So it is very possible it runs in my family. But I also have several medical conditions that could have given it to me.
Pa can also be caused by underlying immune issues. I do not know enough about that but I see people on here with thyroiditis, Hashimoto's and other immune issues that can contribute. As well as some medications, like Acid reducers like Omeprozol. Metformin is supposed to be another one. If I am mistaken about anything, I know someone will chime in.
I had a scheduled phonecall with the doctor and I told him my symptoms and how they had worsened after injections finished and he was telling me they werent related to b12. I still do not believe what he said and am going to keep pushing for more injections. I wouldnt be able to afford the self injections. The doctor just said to see how it goes but I will keep trying.
I will ask my family if anyone has struggled with this and read the article you suggested. Thanks for the continued support!
I think that you would find that self-injecting is not expensive . An injection costs about £1.60 ( everything included ) which is less than a cup of coffee . . In U.K. we get our B12 ampoules from German online pharmacies ( in Germany B12 ampoules are an over the counter item . ). We use B12 depot ( Hydroxocobalamin) ampoules Needles and syringes we get from U.K. medicinal suppliers , If you decide to do this you can get information here .
ok, thats great, I will look to self inject. Would you recommend waiting until I have had another blood test to see whether the loading doses were sufficient or just go down the route of self injecting? Thanks for the info!
if you have PA , you need injections for life . If you self-inject you have control and will find out eventually how often you need to self-inject . We are all different. It’s great to know that you can’t overdose on vitaminB12 . It is absolutely safe . My doctor told me that it was toxic ( absolutely not ) Because he didn’t want to bother giving me more than 1 injection every 3 months! Read the posts on here you will learn a lot !
Loading doses wil not be sufficient if you have PA . Just a word of warning — The medical profession is very ignorant on the subject of B12 deficiency/P.A. I feel very much on my own with this condition , and would rather ask advice of members of the forum than any doctor . This is where I got help, not with any doctor .
Nonsense (from your doctor). I and many others had symptoms worsen following our initial B12 injections, in roughly the fashion you describe. How many B12 patients has he treated? This usually happens if the deficiency is severe or long-standing (or both). I had very similar worsening of symtoms to what you describe, bad headaches, nerves becoming more painful, twitching etc. The period is sometimes described as early treatment decline and is well known by B12 specialists (although the reasons it happens are not 100% understood but usually put down to nerves coming back to life, clearing out and replacing damaged cells etc..)
I was also extremely anxious during first few months of treatment. B12 is used in processes that make important chemicals in the brain that stabilize mood so when things go awry with B12 you can get anxious, depressed, lose motivation and creativity etc. Think of B12 as the axle upon which most of the crucial functions of your body run. It's really that important. When it starts to go wrong, there are few systems in the body that are not affected, definitely including the mind!
My treatment support plan may interest you, although since you're 18, you might not have the supplementation options open to us old fogeys. Discuss with your doctor if you do plan to take any supplements that I mentioned in it.
The doctor is new to the surgery, hes quite young so probably hasnt treated many b12 patients just due to the time he has been a gp. He was really arrogant and didn't particularly help me, (I dont say things like that often but it was really apparent) instead he told me I wasnt experiencing side effects and it was something else, but I have to "make the call". I made a face to face appointment with a different doctor, as this community has been very helpful with guiding me through the process of recovery. Thank you for sharing your experience with me 🙂
You had broken bones from collapsing? Maybe someone here can chime in about that. But I do believe PA can make one susceptible to fractures and osteoporosis.
no these were separate occasions. I had blood tests in the hospitals and everything came back fine. I broke my collar bone 4 days after I came out of hospital whiles playing sports. I was just talking about a bad run of luck. That was before any symptoms were showing, I believe I was healthy at the time.
If you are getting B12 injections every three months, you have been put on the wrong treatment regimen. As described in the excellent article, "The Many Faces of Cobalamin (B12) Deficiency", there are two populations of people with B12 deficiency: people with blood symptoms, and people with neural symptoms; there is very little overlap between the two groups. Blood symptoms are easily treated and resolve quickly. You have been placed onto the blood symptom treatment regimen, but you have neural symptoms, so the treatment you are on is inappropriate for you. You should be on the treatment regimen for people with neural symptoms, which is injections every other day (or twice a week) for two years, or until there is no further improvement - no further improvement even in the symptoms that resolve slowly, not just the "low hanging fruit" symptoms that resolve relatively quickly. Doctors 1) tend to not be aware of the second regimen, with more frequent injections, and 2) tend to quickly get squeamish about injections due to the mistaken belief that B12 is toxic - it is NOT toxic in any amount, and there is no upper level set by any medical group for B12 treatment.
I am not in Great Britain, but there are guides for UK doctors for B12 patients with neural symptoms that your doctor should be adhering to. Others on this forum can provide details on the guidelines. If your doctor refuses to follow the guidelines, there are apparently recommended (by Pernicious Anemia Society) procedures to follow to try to get compliance by your doctor, including letters, with examples of appropriate wording in the letters.
thanks so much for the response! Im going to try and get more frequent injections. Some days I lose coordination in my hands which is really annoying and has promted me to keep on trying. I appreciate the reply
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Things are getting worse
New here and full of questions. Confused and worried.
Worried - Problems Reading/mild Dyslexia-like symptoms?
Why am I not getting better?
Help still have heaviness thats getting worse
