I have suffered from b12d for over 5 years now. I do not think that I have PA but I do have a range of serious recurring problems due to b12d. Doctors seem to directly link B12d to PA then provide the statutory injection regime and the tick the case ‘problem dealt with’!
I include the link above for those who have had the same disinterest from the medical profession as to the brain damage that can be caused by B12d. B12 injections have definitely reversed many of the symptoms that I had - my vision has improved, my aphasia, my memory, my peripheral neuropathy but I still get moments of sudden semi consciousness midway between injections which implies that I have brain lesions caused by b12d - these are explained in detail in the article.
It is a matter of great concern to me that doctors I have seen are not only apparently ignorant or at least extremely sceptical about the multitude of symptoms beyond PA even though the area is being more and more studied.
B12d is linked to dementia - I am 70 and I have not had one doctor take issue about my memory and language problems (although this area has largely been remedied thank whatever god there is!).
It is linked to MS and ME - I have read numerous times of people taken down these routes when b12 injections and an understanding of the damage b12d does . Is it coincidental that so many young females are diagnosed with ME given that this group regularly crash diets?
I am amazed, talking to people my age and older , about the complete absence of knowledge about even the existence let alone the importance of b12 - I knew nothing about until I became ill.
But, if I ask people if the are prescribed PPIs like Omaprezole and lamapresole (sic)! , I am amazed at how many people , like myself, who have had them proscribed on a repeat prescription- you can even buy them over the counter now!
I hope this blog provides some useful information
Good health
Written by
Alfabeta
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Thank you for the article. I suspect i have some mild permanent brain damage from years of undiagnosed b12 deficiency.
I had an MRI of my brain and was told it was normal; what I now realise is that there may still have been white matter lesions just that doctor thought the amount/type were normal for my age .
Article on white matter lesions and B12 deficiency
Thank you for your response and the article. I have been treated as a hypochondriac which is extremely disturbing when the person telling me is, essentially supposed to a scientist yet has no enquiring mind in his her chosen subject.
I was laughed at, sighed at taken down the mentally ill route Etc
One just keeps taking the b12 and one judges whether one’s symptoms are improving.
At the moment, I am at an impasse.
I used to get a sequence:
Sudden semi consciousness with frontal brain pressure
Followed by tinnitus
Followed by auditory hallucinations
The sequence lasted about 10 seconds then faded leaving me confused for some minutes.
I could hear a conversation but make no sense of yet be able to identify the words and, if reading, be able to read the words but make no sense of them.
The events started around midway between injections and continued over 5 to 7 days with up to 8 events on the first day then reducing to the odd one or two towards the end with nothing before or after accept, occasionally the just before or just after my injection.
The tinnitus ceased after 18 months and hallucinations mostly after 30 months although they reoccur sometimes. The hallucinations are rather dream like and make a sort of sense when occurring but no sense after.
All I get now is the sudden semi consciousness then after seconds it ceases and only the temporary confusion occurs.
It sounds like I am getting better but who knows.
Thank you so much for your response life’s a lonely place when you’re old and I’ll . I read your blogs regularly and always find them caring and informative.
I hope your Christmas is lovely and your New a Year healthier.
"laughed at, sighed at taken down the mentally ill route"
So sorry to hear that.
I was shouted at, snapped at, pressure was put on me to leave one GP surgery because I was very persistent in asking for referrals, pressure was also put on me to go down the mental health route.
No-one was really listening when I said I thought there was one underlying condition causing the majority of my symptoms and I suspected it was B12 deficiency.
I learnt a hard life lesson that sadly sometimes the only person who is going to help you is yourself.
It can be very lonely with an invisible illness....I look "normal". My symptoms are much improved after several years of treatment but I need far more B12 than recommended in UK guidelines.
There are friendly, supportive people on this forum who want to help.
Have you thought of joining a PAS support group if there is one close to you. You do not have to have a confirmed diagnosis of PA but you do need to be a member of PAS.
Link above indicates that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms present.
You have neurological symptoms so my understanding is that if in UK you should be on every other day loading jabs for as long as symptoms continue to improve followed by a jab every 2 months.
I've written a very detailed response in another thread with more B12 info. See link below.
Thank you for you mostly, I read regularly your attempts to help people. Personally, I’ve given up with doctors etc. On this issue. I believe if one persists one will be taken down a medical route one will seriously regret. Dalambert one of the French encyclopaedics said that the cardinals were a nest of owls’ which essentially means that groups of so called experts give oxygen to ignorance by continually agreeing with one another whilst at the same time ignoring anyone who breaks with tradition and thinks outside of their agreed and comfortable box.
So many people on here attest to doctors who categorically refute b12d symptoms which even the NHS include on their website.
Good health and thank you so much for the information and words of hope.
I am so sorry you have had such a struggle of it. I am 67yo and I have had my struggles, especially over the last 10 years. I have gotten no help from my doctors. they all felt I was fine. I told one neurologist about the difficulties with speech, and coming up with words, forgetting things in every conversation, the weakness in my legs and my difficulties walking, the peripheral neuropathy with no explanation why, and his only comment was that my MRI was OK. I know how difficult it is for you because I too have been there. Thank God, you did not give up! Your persistence helped you get better. I am you, only a few years behind. I just found out I was B12deficient only 6 weeks ago, and that was only because I ask my doctor to check my B12, he would never have thought to check it. Then he promised to read up on it, as I took him pages of information, and he has still not done it. I have lost all faith in doctors, but I need them to write prescriptions. You really touched my heart when you said, " Life's a lonely place when your old and ill." , it ached right down to my core. It feels that way for me too. How lucky we are to meet so many wonderful people on this web site. I hope you have more peace in your life now and that your health stays well, you have worked so hard for it. All the very best of life from now on! Happy Holidays, and all year long!
Thank you, Sasser. A problem shared is a problem halved! With b12d there’s not much that can be done other than take lots of b12 and hope for the best.
My injections are every 8 weeks now and, for some unknown reason, I’m mostly fine until around week six then I get around 7/8 days of symptoms- it’s uncanny - then they cease, I get the injection and then, almost as regular as clockwork, they return about the same time and for the same duration.
But, over the five years since diagnosed, the symptoms have lessened. I don’t get:
Tinnitus
Nominal aphasia has virtually ceased
Memory and recall has improved dramatically
Blurred vision is really infrequent
Peripheral neuropathy is virtually non existent
All I get now is a sudden state of semi consciousness which is really physically debilitating followed by an inability to understand spoken or written language for a minute or so. I tend to be a little unstable for a while but this is nothing to what I used to get.
I don’t know how much you know about b12d but you might want to read up about the myelin sheath and the damage b12d does to it and the vast range of nerve damage this causes.
Please take your condition very seriously and keep yourb12 levels topped up daily and be wary of speaking to health professionals about your symptoms as, in my experience, they want to take you on medical journeys, in fact do anything, rather than acknowledge that the lack of a little old vitamin can do so much damage.
Thank You Alfabeta. I do take having B12 def. very seriously indeed. I have learned a great deal from people like you. I must fight for my health and quality of life like you and so many others have, and I will. I have the same few days, when it is coming up for my shot, where my symptoms flare up with a vengeance and a day or so after my shot, they subside. Who would have thought a little vitamin could cause so much suffering? More importantly, who would think the medical community would know so little about it. I'm going to do everything I can to open the eyes of every doctor I see and maybe a few I don't see, but this stubborn, in some cases, lack of respect for people with B12 def. must stop. It has been a great pleasure talking with you and I hope your days to come are filled with sunshine and good health.
my consultant helpful in so many ways will NOT believe tinnitus has anything to do with B12d. I KNOW it is = I suffer from it every time I am due an injection. Interested to know this is one of your symptoms.
Yes it does. It's all very worrying. My brain mri had white lesions and t2 weighted flares scattered and sine astrophy. Deemed 'normal for my age' nothing everyone has them though! !
Have you been on the b12 site - it has lists of all the symptoms and most of yours are on the list. I have balance issues, light sensitivity is common etc.
Thank you for your good wishes. I have described my symptoms in great detail. The site is b12d - put that in and it will come up. It’s run by a very elderly Indian doctor in the North West,
Thank you for your post & so sorry you've been through what you have, you are sadly amongst very many.
Most people believe the medication they take is safe as it's prescribed by their doctor.
I was on very high dose opiates for years & became addicted & went to hell & back to get off them & lost everything through that addiction, yet I never took any illicit substances, just prescription medication through my then doctor.
I had a brain scan to check my pretuarty gland which was thankfully ok, my testosterone level was 'in my boots', was diagnosed with severe sleep apnoea where I was stopping breathing on average 80 times per hour per night & suffered very bad mental health at the time, just being given different types of antidepressants over many months until I refused to take anymore due to 1. Not helping & 2. What happened to me previously with opiates.
Also having Anhedonia, a term used for no longer enjoying activities once enjoyed, one reason for Anhedonia is long term substance use.
It will be 4 years in March 2020 when I came off all the opiates & it wasn't until Last year when I was diagnosed with Pernicious Anemia that everything started to make sense. Since self injecting every other day since last Xmas with the help of the amazing people on here, I now feel the best I've felt in very many years.
After another sleep study which I asked for 2 months ago, the sleep clinic have asked for my machine back as the sleep apnoea has vanished! They're now using my story at a conference in January to show how opiates supress breathing & to check people's medication when diagnosed with Central sleep apnoea, (the one where your brain doesn't tell you to wake up when you stop breathing) This is how Heroin addicts die from overdose.
The Macrocytic Anemia I was diagnosed with at the same time has also gone due to the B12 injections, so it all clicked with me as to be the reason the opiates caused my sleep apnoea & why it has now vanished.
I have small fibre Neuropathy from nerve damage which is now improving with regular B12 Injections & my mental health has never been better, even though my memory isn't great.
Now volunteering at drug clinics & meeting many addicts, the similarities between their other health issues & mine at the time are remarkable.
What I'm trying to say is that opiates & other medication we take, just because it's prescribed from doctor's, doesn't mean it's safe to take long term & can cause many other health conditions.
I know if we read every side effect we'd never take anything, but what we are prescribed, I would advise anyone to research what they're prescribed thoroughly.
The only medication I take now & have done for 18 months is Hydroxocobalamin & Folic Acid, I refuse to take anything else & deal with the pain I was prescribed opiates for in other ways & I feel loads better for it.
Thank you for sharing, Ritchie - you’ve certainly been through a lot. There’s been a lot of cases of opiate addiction due to prescription- my wife was proscribed df118. (Sic) which caused an addiction and it took her some time to get over it.
I think one of the problems is the propensity of people seeing medicine and especially GP positions as cash machines rather than vocations. I recently saw a new GP who was amazing in a very simple way - she listened whilst reading my history and provided support. Sometimes one only knows how bad a doctor is until one meets a good one.
Sorry to hear of your wife's struggles & I hope she's now free from the issues it caused.
I agree & I'm pleased you found a good doctor.
One of my passions is to now prevent what happened to me, happening to others through education.
I'm actually sharing my story via a webinar next week that currently has over 200 doctors registered for it, discussing prescription medication addictions, how to prevent & how to spot & look at early signs of dependencey. Even over the counter medications which is a growing problem here in UK now.
I know what I was prescribed caused a massive problem in the US & helped fuel the Opioid epidemic there & it was all through the sheer greed of a certain family who own a big Pharma company, making $34 billion from this one drug alone!
I don’t think people realise that doctors simply look immediately for a drug to solve a patients immediate problem rather than life style changes. In relation to PA if one presents with stomach acid problems a PPI is almost always prescribed. These drugs are supposed to be used for a short time but, as in my case, people are on them permanently on rolling prescriptions. Both my mother and my sister were in Omaprezole 20mg for years - both my mother and sister lived on very reduced diets hence it is unlikely if either of them had the daily recommended b12 amounts - my mother developed dementia and my sister died of a heart attack at 69.
The doctor never considered or even asked about their food intake and I doubt if either doctor knew that low food intake can cause acid reflux hence the PPI’s were not a solution to the problem.
This is what happened to me - I was a vegetarian with just about the borderline of b12 in my diet and I presented with acid reflux and immediately put on omaprezole 10mg and, on and off, I was on them for years.
I know there is a dilemma for the doctor as continuous acid entering the oesophagus is very uncomfortable and can cause cancer but, as I said above, little thought is given to why one has excess acid and I never had a question about my diet and, there had been, I doubt if the doctor would have known its significance.
Another problem, in my case, is that I do not have PA, I have damage to my myeline sheath which causes all my problems but many patients with this damage are taken down all sorts of medical routes - I read there stories on this site weekly.
Again, if the doctor asked about diet and stopped going for quick fixes with drug remedies, many of these problems would never occur in the first place.
Very helpful corresponding with you. Your mission is really admirable.
I too was prescribed Omeprazole due to bad acid reflux after the damage the OxyContin I was prescribed had caused.
Once I read about B12D after being diagnosed, I stopped taking it & haven't taken it since.
When I was first diagnosed with sleep apnoea, I was told I was one of only two in my county to have this type of machine which funding had to be applied for, at a cost of £6k!
I'm not complaining as it kept me alive, but when i met with the clinic to discuss using my case at their conference, I was told I was now one of six, but the only person to ever return a machine of this type. Hence my suggestion on looking into what medication people are prescribed & how the two can be linked.
I truly believe the NHS could save many £billions if more research was done on B12D.
As you rightly say, I dread to think just how many people are misdiagnosed with early stage dementia & MS etc.
An issue I believe dr's have is they have a limited time & are not specialists in the medication they prescribe & are under a lot of pressure.
Hopefully more investment will be ploughed into our healthcare system but with all the many cuts over the years, I'm not holding my breath,(no pun intended!)
Doctors don’t understand about opioids. I’m prescribed codeine phosphate, tramadol, dehydrocodeine, morphine sulphate and gabapentin. Told u can’t overdose on codeine phosphate and to mix the codeine with tramadol to give longer relief. My problem is I haven’t managed to build a tolerance and get those horrible side effects so won’t take anything in the day with having responsibilities. I clench my jaw when in pain and have smashed my teeth so many times the poor dentist got investigated for fraud as I was having teeth fixed a couple times a month. She made me a mouth guard but I don’t take it out with me.
Doctors just think I’m a pain in the arse complaining about the side effects of opioids n say I should be ok on them by now.
As for breathing.. I once got a dodgy batch of codeine phosphate, it hadn’t been mixed properly I don’t think. I just took 2 tablets and I stopped breathing. U know if u go swimming and hold ur breath, ur body forces u to breath n u feel like ur eyes are gonna pop out of u don’t gasp for breath. Well I had no physical urge to take breath, I had to sit up all night watching the second hand on my watch and telling myself to take a breath take a breath. I remember being so tired and so afraid that if I fell asleep I’d never wake up. The experience terrified me. Ur body literally has no urge to gasp for air. The codeine were the mildest of my painkillers but it was that one in a million dodgy batch that was far stronger than should have been. So I know first hand how bad they are.
Did u know that painkillers stronger than morphine but no side effects have been invented. The pharmacist told me about 2 and how they just get shelved and never put into production. I guess more profit if u get people addicted so ur not just generating income from pain sufferers.
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B12 deficiency caused by h.pylori.
