Hello everyone, maybe I am way off here, but I feel like if we make enough noise in the right places, someone will have to listen to us about the frequency in which we receive treatment for B12D/PA.
We need to at least get the same treatment that B12 health spas are allowed to give to anyone off the street, who don't even have PA.
B12 lives matter! sorry for stealing that, but my point is, we need to make a movement. We need to speak up and get doctors to hear us. I am a graphic designer, I would be willing to donate any time to design brochures, fliers, posters, letters, handout cards, etc. anything!!
I am willing to do whatever I have the energy to do, to help spread the word.
But one can not do this alone. People have been fighting for this for a very long time, why isn't anything happening? why aren't they listening? What can we do? Any ideas? I will make posters you can print out or download and get printed to hang in windows, bulletin boards etc. We can all write letters to the supreme court or to the CDC or the FDA. Whoever we need to contact to get them to hear us, see us and change the regulations on B12.
I called a B12 health spa a few weeks back to ask some questions.
This particular Health Spa, quoted me $30 a jab. I can have 58 jabs in a 90 day period. No questions asked. And there is no one to monitor this or to stop me from going to another spa to get the rest of the injections I would need to inject daily. So why isn't that a big deal? Why is that allowed, but our doctor don't have a clue and their hands are tied? Why can a salon give 58 injections in 90 days and we are only allowed 3 injections in that time? why aren't they worried about OD'ing? Because they know you can't!! then why don't doctors know this simple thing? Where is this disconnect coming from?
Who do we talk to about this? How do we protest for better treatment? I don't know where to start, but I am willing to design anything needed to do it!
In person support groups. There are some people on here looking to meet up with others in person to have tea and lunch etc. to just support each other. The virtual support is awesome. But some people are very lonely and alone and would like to meet real people in person.
I know it is a lot of work to take something like this on. I don't know how much energy I will have for this, but I am willing to do something.
Picketing? stand-ins? walk outs, protests. We need to make a movement of some kind. We all just need to bombard the right people with all the info we can. We need to make it impossible to ignore us any longer.
Alone we are weak. Together we are strong! What can we do? Any Ideas?
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EllaNore
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Good ideas Nackapan. Thank you for putting up posters. I have printed off PAS posters too. Brought them to the Eldercare center here. I leave my little 3x5 cards everywhere.
Bless you Ellanore I totally agree but as Nackapan I can only guide you to Pas or Tracy. I have sent info to both my surgery and MP without resonse which is frustrating. As you know I have highlighted petitions on here hoping they will reach their target.
You sure did try thank you! I was thinking maybe there was more power in numbers than individually. I did try to sign that petition but I'm in the United States. But, I did send a message to Tracy on her petition site. We'll see if I hear from her. I know it seems fruitless and impossible. All these decades nobody's been able to do anything about this. But that doesn't mean we give up either. Now according to Wedgewood, a/some German supply chains are not going to ship to the UK let alone the United States. What do we do? Go to those health spas that charge 30 to $90 per jab? Is that the future? are they trying to set us up to have to go to one of those out of desperation? B12 seems to be a big money maker for the spas. I just don't like the way thing are going. B12 spas are popping up everywhere. Just Google a few and contact them. I did and it's infuriating that beauty beats life when it comes to B12. You can have it to lose weight, to give yourself a little boost before you go on stage, 58 injections in 90 days to be exact. Yet we can't get it to save our lives? that is bullshit. Sorry, so irritated about this injustice and double standard. Thanks for replying Jillymo. Have a good day. 🦋
I too rang a local spa sometime back and was astounded by how much they were charging for a jab, I inject daily and havn't lost an ounce.
If we are forced down that rout many like myself who a retired or not able to work will not be able to afford such cost. Like you it makes me ruddy angry and in no way do I want a downward slide with regard my health. To add insult to injury the neurologist I saw has labelled me with FND ! I am now battling with the ombudsman to get this crap removed from my notes.......
I'm so sorry Jillymo. I have a new hematologist that's trying to disprove my PA diagnosis. Instead of helping me he seems to be trying everything you can to disprove it. I don't see the reason. I don't get it. I'm sorry they're trying to take your diagnosis away from you too. I've had doctors put misinformation into my records as well and every doctor from then on reads it and labels you that and you find yourself in a situation where you can't get them to listen to you because they read what the doctor's wrote and that is all they want to know.
Yes if you call health spas and ask questions, it's crazy how much they charge. The other thing is it is methylcobalamine that they're giving. There is no difference between the B12 at a health spa or the B12 that our doctors give us. B12 is B12. There's only the three or four types cyanocobalamin hydroxylcobalamin methylcobalamin and that other one I had never heard of before.
The spas sell methyl, the purest form of B12. And they're giving that to people 58 times in a 90-day period that is what they're allowed to do. At least in the United States. I sent a message to somebody in the UK at a health spa. they charge $90 an injection. I wrote to them to ask them how many B12 injections am I allowed to have and how long does a B12 injection last. I'm waiting to find out what they say. I read a B12 injection can last up to a week. Everybody knows, even doctors know, you take something it doesn't stay in your system that long. If you had to be drug and alcohol tested for a job everybody knows that if you smoke weed or drink or take pills that within a week or two it's out of your system. B12 is water soluble. It's out of your system in a week or less. And if that's the case what makes them think we can go a whole month without it? There are so many loose ends and things that don't make sense. they're constantly contradicting themselves. And they're trying to gaslight us! The health spa that I first contacted a few months ago told me that all they have to do in advertising is not mentioned that it's a cure for anything and don't act like it's some kind of treatment for an ailment. And they can get away with selling B12 injections at $90 a pop. What's infuriating is for some reason B12 health spas are popping up all over the place. That's why I think if we could find one of these Hollywood people who get B12 injections and we can explain to them how important this really actually is and it's not just for beauty and weight loss it's actually to save lives, that maybe one of these people could be a spokesperson. There are things we can do I know we can.
Dont start me off EllaNore I am on the war path as it is. 😡
I have antiphospholipid syndrome ( sticky clotting blood ) and had a phone consultation with her recently. I explained I am waiting to be seen in gastro but there is a 67wk wait. Her reply - this is not good enough you could have an internal bleed causing your B12 deficieny. She was going to look into some other issues for me and get intouch with my surgery to move things along.
It is 2days short of a month since the consultation and as yet she hasn't even had the bloody letter typed out let alone acted upon it. The FND crap adds insult to injury.
I'm so sorry Jillymo! That is extremely frustrating. Yes I'm kind of in the same boat. for some reason he's running all these tests to find out if I'm accumulating B12 in my system. Because he thinks I have too much B12 and he expects to find a big backup of it somewhere. So far all the test he's run have come back perfectly fine. I don't understand why he can't just go with my initial diagnosis. I'm so much better than I was. But of course he didn't see me then, only my one doctor saw me and he's the one who diagnosed me. I need to send him a letter thanking him because he was the only sane doctor I've had in decades or since my diagnosis. And I miss him. It has been a ridiculous roller coaster ride ever since my diagnosis and nobody knows what they're talking about. This is crazy.
I seem to spend my days complaining these days at the incompetance of these damned imbaciles. If not batting emails to the NHS its to the ruddy couriers that dump parcels on the doorstep without even knocking what the hell is going on ? ?
At first I didn't lose any weight either. On the cyano but when I accidentally took all that methyl, I lost a pound a day. Wait does not come off of me easily. Losing weight has been a nightmare for me. And I truthfully shouldn't be overweight to begin with because I'm not a major eater. So my weight gain made no sense to me in the first place. I thought it was from gabapentin, or some other drug they had me on. I could starve myself and not lose an ounce. But I did lose weight on methylcobalamine. There's no doubt.
I print off PAS posters and hand them out where I can , I also sent a lot of info to my MP and had a positive response at the time including a telephone conversation with him. I see you are in the USA EllaNore but you are right we do have to keep pushing for more understanding and raising awareness wherever we are. Good luck and best wishes😀
Thanks for whatever you do Pitney. We just have to keep trying. Every little bit is something. It's better than nothing. I just thought if we could show them a pile of letters or something all at once and overwhelm them with letters and information and petitions. They can't ignore all of us at the same time but they can ignore each of us individually very easily.Thanks again for anything and everything you've tried. Don't stop though. 😊🦋
I’m just in the process of applying to study beginners fine art with similar thoughts partly in mind. In fact I have an inspiration for a first work based on Encounters by Hurtado called “I don’t see anything wrong….”. So if I get a bit better I am happy to chip in some work
That would be wonderful roseflowerdew. Congratulations on your career choice. It's a fun and interesting field. Always changing. Everything that exists had to be designed by a designer or an artist and drawn before it could become reality. I think it's a very important career choice. Good luck to you. Maybe someday we'll think of something to do together to fix this problem. The young people are so much more talented than me these days, I can learn so much from them. I bet you're already very good. I'm retired now, but can still offer my talents. Thank you! Please share if you do anything for B12. Would love to see it. You may even have a better chance because you're younger and you go to school and you have an outlet to voice your opinion on things. The younger generation these days seem to really know how to get noticed and make people listen. I know there has to be a way to fix this problem. I think it's just a matter of finding a platform where people will hear us and respect us. A public platform. We need somebody famous who has pernicious anemia who can be our spokesperson. I was thinking about Matthew Perry because he was highly addicted to alcohol and drugs, taking 55 painkillers a day. He's got to have residual effects from that. If he doesn't have a B12 deficiency I'll eat my hat. I was thinking about contacting him and finding out but I don't know how. I was also thinking of Jeff Bridges because he had cancer and chemo and COVID and immune system issues and I thought maybe he might have a B12 deficiency. I've got a marketing brain, so I'm constantly thinking that way. One famous person with PA is what we need. Lolol
oh gosh I didn’t realise I came across as a young person lol My career ended because of neurological complications of PA and Im in my 50s …..so it’s a big change of direction for me personally coupled with the challenges of my gaze darting around and my coordination poor because I don’t have neurological support!
RoseFlowerDew, Do you think this would be a good school project? Would you like to send in design ideas and work on this with me? I would love that. Do you think it would be a fun project for everybody in school to come up with ideas. I don't have a prize for the winning design, but it would be a great learning experience for everybody. It would help them come up with a logo a slogan and a marketing campaign. It could be an interesting way to get this started. Let me know what you think.
☺️ My application hasn’t been accepted yet as I still have to pass an interview and will start next year if accepted. But if all goes well post again in the new year and we can see what’s possible re fine art stuff. But you know it wouldn’t hurt to have a pinned post in this group gathering comments, slogans and ideas….Does everyone in the group ok for a pinned post?
I didn't know you could pin a post. I will if they will allow it. And if you want to be creative and put in your 2 cents even before school, that is great too. Thanks so much for your ideas!
I completely agree with you. I talk to everyone about B12 deficiency. My friends laugh, because sooner or later they're going to hear me talking to a stranger about B12. I am the oracle of B12! I would love to have a t-shirt and maybe a bumper sticker that would lead people to ask me questions. I'm not clever enough to think of a design but I would definitely buy them.
Now that's a very good idea MoKayD!! A t-shirt that we could wear that would prompt people to ask us about it. Then we could hand them our little pocket cards that I already made with information on. That's a great idea. What we need is some kind of catchphrase or slogan. We can't really steal the Black lives matter and turn it into B12 lives matter, but something like that. If we could think of a slogan and a design and a cute catchphrase we could get some attention. I am open to any and all suggestions. T-shirts hats shopping bags, anything coffee mugs anything that we could put a slogan on and a logo to draw attention. The squeaky wheel gets the grease. We cannot sit by and let this stuff happen we need a cute slogan and a catchy phrase and a great little logo. I don't have to be the one to design it either. If there's somebody else here more talented than me or has a better idea I am all for it. I don't need to be the leader here. I would love it if somebody came up with an amazing slogan for us. We can all work together and give our ideas. That's how it happens that's how things work That's how things get done. A T-shirt is a great idea and a great start.By the way I drive my friends crazy because I'm constantly talking to people about B12. They roll their eyes at me but already two people have been diagnosed with it. So I'm very happy about that. Two people who had no idea they had it.
I have a neighbor that has a balance problem and slurs his speech and drools, it came on about a year ago and nobody knows why. I gave him the B12 card that I made and now he's going to the doctor to get tested today in fact. He's going to my old doctor who's going to be so pissed off because I have sent so many people to him to get their B12 tested. Lololol Oh and the postal lady at the post office thinks her mother might be B12 deficient. She's in a care facility and has all of the symptoms. So yeah if we keep talking and spreading the word we can help a lot of people. Good for you Thank you for this wonderful idea it really is a great idea.
Yay. Ok. I think a T-shirt is our first item in then. We need a catchy slogan and catchphrase. To catch people's attention and make them interested. It could be a visual or it could be words or it could be both.
Great idea to push and I know many people have and are pushing - Sally Pacholok, Tracy Whitty, Sally Pacholok even had a movie made about her, although it went under the radar mainly.
When I first found out I was deficient, it felt very strange as a concept. How could a single vitamin set off so much chaos in my mind and body? How could a lack of a vitamin debilitate me to such a degree?
But also, how come I can go to a pharmacy or health salon/spa to get injections? That's weird, I thought. Because if someone is ill, they'll depend on the Doctor for that. So why would they go to a spa?
The medical community firmly believes that vitamins and minerals supplementation is a waste of money. And every few years rolls out the same article:
If Doctors don't believe that supplements are worthwhile unless you're deficient-despite there being no globally recognised point of deficiency for B12-then I would ask the same question, i.e. what is the point of health spas?
Is it a con? A rip-off? A placebo?
If so, then why is it available?
To me, it's a service for vegans and wealthy health-nuts on the latest diets, who want a top-up but are probably already supplementing B12 daily. And that's probably how medics see it too.
What I'd be interested to know is whether there's much difference between the types of injections in a Doctors office and in a spa. Is the medical one superior?
Anyway - good luck. It's a lifelong battle this. B12 is an essential vitamin but the vegans keep telling everyone that a plant-based diet provides all the nutrients we need. It doesn't. And since Doctors almost never ask about diet or nutrition in the UK and USA (they do in other countries) we are all walking into chronic disease thinking we're being healthy or saving the planet.
Education is key. So if you had any ideas about designing a visual graphic that showed how B12 circulates around the body, absorbing in the ileum and stomach and round again, and how diet 'tops up' this process I think that would be amazing.
Then we can show at which points the B12 absorption could go wrong. PA is clearly stomach and IFAB problems. But there can be problems in the ileum and gut from SIBO, Candida, ileal resection.
Perhaps if the designs were lighthearted or comical it could help educate us all on the WHY. i.e. WHY is B12 so important? And why is it that some people become deficient?
It's incredibly complex. But I think that's one thing I haven't seen, is a graphic representation of the mechanics of B12 in action.
Wow pickle 500 that is a very discouraging article. The title alone is completely wrong. That's incredible that a medical facility would publish something like that. Supplementation is everything, especially if you're a vegetarian. I don't know why I'm so shocked that they would put out an article like that. That is so counterproductive and so wrong. Yes something whimsical light-hearted not too heavy. That's what we need. Things to spark attention. Things to open our eyes. I am open to everything. That kind of information that you're talking about the way it absorbs and everything I don't know enough about it but if somebody gave me the information, I could try to illustrate it. That might be more advanced information that could be handed out in a pamphlet or in a brochure. First we have to hook them with something fun and catchy so they ask questions, then we have to teach them by explaining things and handing them a package of information and illustrations like your suggesting. Thank you so much everybody for jumping in and giving ideas. This is how stuff gets done. I hope we come up with something. I really would like to this is a great start. Thank you
I think it is so hard because the medical community have been taught what they've been taught, which is very little concerning nutrition. It's almost embarassing for them to bring up anything to do with nutrition because they are so out of their depth. All they know about B12 is anemia and so that's what they're looking for. Then levels etc. They simply don't know much else about it.
So of course they would say that supplements are a waste of time. Even though my wife used to say that, as a younger woman, she used to have terrible hair, nails and cracking joints. But since taking supplements everyday including collagen, all those things have never been better. So did she have deficiencies? Or not? Were the supplements placebos? We'll never know, since she was never tested for deficiencies. But also what constitutes a deficiency? I don't think medics know.
However, we are beholden to medics for this "medicine". So how can this be right? Asking for medicine from a Doctor that doesn't know what the medicine does. They are simply following guidelines and 'getting levels up'.
Radical change in the system is desperately needed. And if we can advocate for Over The Counter injections in the US and UK, it will be one step closer to better health for everyone. Perhaps it's because we are generally conservative nations, whereas Canada, Germany tend to be more progressive. Either way, it's harming our health. So maybe the shock factor is what's needed most? Scaring people usually makes them do things!!
Perhaps we should scare the medical community more. But then in these times they may all leave!!! 😵
To be honest I don't know why people are so afraid to tell the truth no matter how scary it is. Yeah some things are scary to read but if it's the truth it's the freaking truth. I'd rather be scared with the truth than to be pacified with a lie. The truth is B12 deficiency can kill you.
Indeed. I think it's the complexity of B12 in many forms, not just PA. Perhaps PA IS the most deadly. But Vegans often argue that 'most people I know with B12 deficiency are meat eaters' and in some cases that may be true if it's an absorption problem. However, lack of intake is most likely a contributing factor, as it was in mine. Not the SOLE reason but it did not help matters that I had a pescetarian/flexitarian diet.
But would the Spa's ever market their jabs as 'life-saving treatment'? Most of them know that the Doctors don't do the job properly or go off on levels not symptoms.
So in my holistic-oriented mind, I tend to think that we could make something change through education. Vegans should know that there are risk factors, but perhaps data would suggest that the majority of cases are from lack of absorption not purely diet.
This sort of education would help Doctors correctly manage treatment. If only we had some money to commission a proper piece of research into it. If only Big Pharma companies would spend money on that, rather that trying to persuade the world that vitamins and minerals are 'secondary' thoughts regarding health and a waste of money. Perhaps because no-one can profit from them.
The Lavalni family haven't done too bad out of vitamins in the UK (Vitabiotics) and at least their enterprise is improving health. Perhaps we can persuade them to commission research into B12? I really hope someone in a philanthropic capacity gets B12 deficiency so they understand the gravity of the condition. That's really the only way things change, when it affects wealthy or influential people personally.
Haha it's sad to say that but yes it would be wonderful if somebody famous or philanthropic got pernicious anemia. No there is a rule to the health spas that they are not allowed to claim that it saves lives or that it is a cure for anything or that it is any kind of treatment for any kind of medical ailment. That's against the law for them. According to Tracy's website. B12 spas are not allowed to market B12 as any kind of medical cure of any kind. It has to be considered a supplement and a beauty aid not a medical aid. So the only difference between a B12 health spa and a doctor is at a doctor uses B12 to make medical treatments and a health spa uses it to lose weight and give energy. There's no difference between the two b12s whatsoever. So as you can see they're trying to gaslight us by telling health spas that they cannot market B12 as if it's a cure-all. That is pushing a big fat lie and gas lighting us. They're trying to fake us out they're trying to make us wonder why can a health spa get it but the doctor can't? Which is exactly what we're saying. There is no difference between health spa B12 and Dr B12. Advertising and marketing is the only difference. That is the little tiny sliver that I'm trying to expose. I want to go to a judge and a court of law and I want to ask them plain and simple what is the difference between the B12 injection at the spa and the B12 injection that my doctor gives me? they won't be able to answer that question they won't have a suitable answer as to why they're trying to gaslight us with fake advertising. Just because they omit things in their advertising doesn't make it any different. So what they're trying to say is wording is all that matters. Will tell all the folks that the B12 and the health spa does all these great health things for you but it's not a cure or treatment for a medical condition. When really it is. It's just a big huge lie. How are they getting away with this? Why are they letting spas get away with this? Are health spas our link to finally getting heard.? So it seems to me that what needs to be done is the big lie between B12 health spas and medical B12 needs to be exposed. Somebody needs to ask somebody point blank why can health spas give out 58 injections and 90 days but my doctor can't give but one injection in 30 days? There is no answer for that they won't be able to answer that question and I want to know who do I ask that question to because I wasn't to ask it. Who sets this rule? Where did this rule come from? Who made up this lie? And why So they can make buko Buck selling B12 injections for $90 a pop? It's a money thing plain and simple and I want to expose it. But I don't know who made that law who made up that lie who is the one setting these rules? That's what I need to know. Okay I'm so pissed off right now. I need to take a breath
It's as if we're all held to ransom over an essential nutrient isn't it. A simple injection into the blood stream is only profitable for profit makers. And it isn't profitable for healthcare.
Again, education is the heart of it. It's so easy to think 'it's just a vitamin deficiency' and that is what Doctors seem to think too. I think there is some gaslighting, but I also believe they don't know what they're talking about. B12 is so complex in the body that Drs just don't have the first idea about it. Ignorance is bliss etc.
OK - I'll leave you to cool off now! Take care, and keep fighting
Doctors have had 177 years to figure it out. If they haven't figured it out in 177 years they don't care to figure it out. I'm sorry I have no empathy for the lack of education that doctors have. It's not just with B12 they don't know very much about endometriosis they know nothing about adhesions. it seems everything I've had in my life they've known nothing about. But as far as B12 goes they've had a 177 years to figure it out. And hundreds of thousands of people have been trying to tell them. So as far as I'm concerned they don't want to know.
Oh sure, I'm not suggesting we have sympathy for Doctors. I just think the entire medical system is premised on the wrong ideas.
The medical system does not factor in anything regarding nutritional health, certainly not in the US or UK. Never will a physician or GP ask you about your diet, why? Because they know jack s*!+ about it. They're not qualified to inform you of the right type of diet because they didn't study it.
B12 they know because it causes anemia, like iron. And anemia is bad and deadly, so it must be included in their learnings. But fundamental truths concerning gut health, nutrition, minerals? Nowt. Nada. They are blind like the rest of the world. That, compounded with big pharma profiteering over senseless medications, is why we get this message that 'vitamins are a waste of money'. No, they're not. It's just that science hasn't found a way to track the differences they can make. Science cannot measure efficiently the differences, since it doesn't even know what a deficiency is for certain.
We need to enter a new paradigm where nutritional health makes up at least 50% of medical training. Plus, a study of the impact of gut health and the brain/gut axis. When we do, we may just solve some major neurological health conditions overnight (parkinsons, dementia, CFS, fibromyalgia).
The problem is we are conditioned to think a certain way because that's what our education has always taught us. Hence why B12 is a stigmatised issue and most medics use 'placebo' to get rid of us since they have zero clue about how to help us.
It's tragic really. Hence why we all need to educate each other more!!
It is very tragic!! Right now a new hematologist is running a bunch of tests to find out if my high levels of B12 are because I'm storing it and it's backing up in my system. I cannot understand why the hematologist does not simply know that because I inject, my B12 levels will be greater than >1,500 or even greater than >2000. he insists that I'm taking too much B12 and that it's backing up in my system. Every blood test has been coming back the last few days as normal nothing is backing up in my system. This is ridiculous that this hematologist doesn't even know this simple fact. How could a hematologist not know that if you inject B12, your levels will be greater than 2,000? This is ridiculous. This new hematologist is sending me to an even newer hematologist on the 17th of November. He's running all these tests and then when I go see this new person. I have no idea what they're going to say. But I have been disproving that B12 gets stored in your system. Because this hematologist seems to think it does yet my blood tests show differently. So it's nice to know that I proved that not only can't you OD on B12 but it also isn't being stored in my system and backing up. I can't even imagine what's going through the hematologist brain right now. he's freaking out. This will be my 4th hematologist on the 17th. That's ridiculous. My hematologist, my gastroenterologist and my GP none of them know anything about B12. No where to turn but here. I'm going to let them run all the tests they want because I don't mind being a guinea pig, and hopefully it will educate them. In fact I want to be a guinea pig. I'm sure this doctor is completely confused as to why my test results are coming back great and disproving what he thinks. He's also trying to say that my B12 levels of 221 were not really that low, he said I'm not anemic so I don't have anemia, but my MMA is slightly elevated, but not enough to matter to him. And he said that my IFAB test is probably a false positive because I had already started my loading doses. So for some reason this guy wants to shoot down everything that I've been told. I just don't get it. If it wasn't for this forum I would be completely confused because of my doctor's. I would be hysterically crying, I wouldn't be able to figure out what was going on. I would be very very scared right now. The lack of their knowledge feeds into the fear of their patience. And if it wasn't for this forum that told me the truth about B12 I would be completely scared out of my mind right now. What this hematologist is doing to me is uncalled for. The hematologist prior to this one, said that I didn't have breast cancer. That I had pre-breast cancer, yet a third of my right breast is gone, I went through radiation for 3 months and a year worth of being very scared. Yet this hematologist took this diagnosis from me and threw it out the window. Because he said it was stage zero which means it simply hasn't gone outside the milk ducts. It came with all the same fears it came with all the same treatment and it came with all the same side effects. And after my cancer treatment I was put on anastrazole which is what brought my PA to the surface and has completely destroyed my life. And for these two doctors to take these diagnosis from me and tell me something different than what I know to be true is completely wrong. And now I'm crying and now I'm very upset and now I'm going to go. Doctors have no right to do what they do. They're stupid they're egotistical and they don't know what they're talking about. The last two years of my life have been very scary because of their lack of knowledge. And if it wasn't for this forum I don't know what I would do. What's happening to me is very wrong. And I'm going to do whatever I can to make sure it doesn't happen to other people.
Oh my god EllaNore how awful!! I am fuming for you!!!!! It's so pervasive isn't it, it's not just B12 issues that are mismanaged, it's everything.
I'm so glad you find your way here. Being treated like this really lights a fire under our butts doesn't it! It should not have to be that way. How can WE as simple-minded non-medically trained folk better understand these things. Truly mind-boggling.
My mother is also going through this now. Her GP and neurologist don't understand why she would need more than 1 injection a month when her levels are >2000. They're now doing workup for what looks like MS. What a waste of resources. MRI vs 4 injections a month?? With proven pernicious anemia! Hmmmm..
Exactly, jade_s. Thank you. It is all very upsetting. I let it get to me. It was to early in the morning for me to be thinking about all this and it upset me. I'm sorry. I'm sorry your mother is going this too. I'm sure we all are to some degree. 🦋
Yup. Negative IF test 5 years ago so she went on tablets on her own. Last year she started SI when tablets no longer helped and neither did the GP. Another IF test came back positive this year. Doctor prescribes B12 but only 1 injection a month. And "all" she has is some slight tingling, now and then stabbing pain that leaves as quickly as it appears, and some memory issues. She's probably better / less symptomatic than 99% of the people here. And yet... MS?? LOL it actually makes me laugh. Can't cry anymore, just laughing all the way to the nut-house 😆😜🤪
Your mom's lucky she has you. You have so much knowledge of all this I'm sure it's been a huge help to her. It's been a huge help to me. Good luck to your mom. Yes I took myself out to breakfast this morning. Then I think I'm going to take a drive. Have a wonderful day
It's very sad. And it's horrendous to have to go through it, I'm sorry it's so difficult.
I don't trust Doctors and hate being made to feel I'm a hypochondriac or time waster. Which is why I was a very late diagnosis - I tried all other avenues of alternative medicine and none of them picked up on B12. But they did offer some clues as to the issue.
My distrust of the system led me to self medicate and I've self-treated myself the whole way. It's been full of regret to do so, but its the choice I made since I did not trust that Doctors really knew what was wrong with me and I didn't want to risk time being wasted and my condition worsening with irreparable results.
My continued explorations included a private and NHS neurologist, but of whom demonstrated absolutely no knowledge of B12 and both suggested placebo. I was also told that I could 'have too much B12' by a lab technician who did my ECG and nerve conduction.
All of these experiences proved to me that the medical system is based on an archaic way of looking at the body. And that it has not caught up to understand the individual differences between vitamins and minerals. They simply do not know that B12 levels need to get high quickly and stay high. My own GP admitted he didn't know much about B12. I admired that he was trying to help me and be open. So where do I go if he doesn't know? Can you find someone who does?
"Err...."
I'm afraid that the world just simply does not understand B12. And I was not willing to make myself a victim of such negligence, so I took it on entirely by myself. In hindsight, a bad idea. But was it? Could I be worse off as a result? No-one could say.
The Doctors help me to discover what was wrong with me. But they were not equipped to help me treat or recover from it. And I was not willing to put my life in the hands of someone who doesn't know what they're doing.
Like you say, thank goodness for the internet. And for this forum and others platforms where we can help ourselves. I hope you can continue to self-treat and improve your condition as much as you can.
I wouldn't be sorry for self treating. You're doing just fine helping yourself. I don't trust any doctors more than I trust myself to treat me. So here we are treating ourselves. This is almost 2023 not 1850. There's no excuse not to know more about this than they do.I have no doubt you are better off with the route you were forced to take. I hope you feel better too and I hope you continue to benefit from whatever treatment you do for yourself. 🦋
We need a catchy phrase. Maybe something shocking like a question, do you feel like you're dying? Hahaha something grab attention. B12 isn't a weight loss product. B12 is not a beauty product. B12 is a life-saving product. If anybody has slogan ideas or any kind of idea you can message them to me. Or you can make a post and get other people's opinions. Either way I am open for anything. I will be thinking today as well as best I can with this B12 brain. I have to admit my creativity is not what it used to be but I will give it one heck of a try
I just got another answer from another B12 health spa in the UK that I wrote to. I told them that I have a prescription for B12 once a month but I need more than that. How many B12 injections can I get from them? Their answer was you can get one injection a week. Would you like to schedule an appointment? I then told them I was asking for a friend and I will pass the information along and let them know. Thank you very much. So this health spa in the UK can give one injection a week of methylcobalamine for $90 a jab. That is different from what the other health spa told me which was 58 jabs in a 90-day period. So maybe it varies but that's the information I've received so far. Interesting.
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GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
B12 injection query
Am I missing something?
A surprise from my last visit to the GI
