A year ago I knew nothing about B12D. Then I had a massive seizure. I completely evacuated my bowels. I was unconscious for over 30 minutes. The first thing I heard when I regained consciousness was the paramedic asking me to speak to her. I understood what she was saying but I couldn’t speak. Over the next 10 minutes I regained my ability to speak but it was really slow and halted. Same with my movement. It took over 10 minutes for me to be able to move. I felt like a PC that had crashed and was slowly rebooting in safe mode. The paramedics said that they had never seen anything like it. All my vital signs were fine so they couldn’t understand what had happened to me. I was taken to A&E. When I arrived I was able to get off the gurney but I couldn’t get onto the hospital bed. My legs had no strength. And I had no control over my bladder at all. I didn’t even get any warning that I wanted to urinate. It just happened. It wasn’t all bad. My speech was getting better.
Prior to this seizure I had these symptoms of B12d – ataxia, aphasia, dizziness, hair loss, weakness, fatigue, loss of fine motor control, blurred vision, depression, confusion and anxiety that got steadily worse over two years. And the worse thing was my fuzzy head. I just couldn’t think clearly. It was like I was permanently drunk. But I thought I was just getting old. I am 62.
Unfortunately all this happened during a global pandemic. A&E had no idea what was wrong with me. I had a CT brain scan but it was clear. In the end A&E decided that I had just fainted and decided to discharge me. They knew I had problems with my bladder – I was weeing all over the place but they ignored it. And they knew I couldn’t walk properly but they ignored that as well. They just told me I had fainted. It was nothing to worry about. And they sent me home. I knew that I shouldn’t have been discharged but I didn’t care. I just wanted to get away from any chance of getting Covid. .
Next morning I was worse. I couldn’t stand without help. I didn’t sit down – it was more like falling down. I couldn’t walk properly, I lurched or staggered. Going upstairs I had to hold on to the banister and haul myself up. And the worse thing was my fuzzy head. I just couldn’t think clearly. It was like I was permanently drunk. And I still had very slow speech.
I was really frightened. I knew something was seriously wrong. I honestly thought I was going to die. My partner wrote to our GP practically begging for help but got nowhere. I tried to see a a doctor on other occasions but was refused. It was a crazy time. The only thing left was to find out what was happening ourselves. Through my research I came to believe that I’d crashed because of low B12. I knew I needed injections. But I had no way of getting them. I could have gone to the main hospital but, with the anxiety levels that I was experiencing, I was totally freaked out about getting Covid. That’s when I came up with my B12 protocol. I reasoned that oral B12 could work. After all George Minot won the 1934 Nobel prize for discovering that raw liver could cure PA. And there have been several clinical studies since then that suggest oral B12 can cure PA. I ordered some B12 supplement from Amazon. Within 24 hours I started recovering. With 3 days I could walk and talk. And I rapidly recovered all my faculties. I didn’t get to see a doctor for another 8 weeks. I think oral b12 saved my life. Or at least stopped me getting permanent nerve damage.
When I finally saw my GP my B12 level was 347. The doctor told me that as my B12 level was normal and as I wasn’t anaemic I couldn’t have a B12 deficiency. So no injections for me. I decided I had to be diagnosed as PA to qualify for injections. I have had to fight like crazy to get that diagnosis. I refused to be referred to my local hospital and went to Addenbrookes instead.
However now I qualify for injections I have decided not to go for them. I like my protocol. I get a steady trickle of B12 all the time. I don’t know for sure but I believe my B12 blood level remains approximately the same all the time. I don’t get the coming up or going down periods that a lot of people on injections experience.
During the time my B12 levels were falling I became such a difficult person to live with that my partner was dreading retirement. I was irritable all the time and had wild mood swings. I just couldn’t be bothered to do anything. Literally. Wash my hair, put on make up, house work - I had no enthusiasm for anything. Well, to tell the truth, I’ve never had any enthusiasm for house work but I always did what was necessary. I was tired all the time. Sometimes I would go back to bed just a few hours after getting up. When my partner realised that I was returning to normal he actually cried. I cannot believe what difference B12 has made to me. My depression is completely gone.
I have never said that pills are the answer for everyone. Only that they can work. In extreme circumstances like mine, when you have no access to injections, they may be the difference between life and death. Or permanent nerve damage. I feel that the forum should know about this protocol. At the time of my crisis I didn’t know about this forum. But if I did and told you about my collapse and how frightened I was of dying, would you have been able to help me?
My partner is very annoyed that I knew I had all these problems prior to my collapse but did nothing. It was very strange. I knew I had something wrong with me but I just didn’t care. And I was very suspicious of all doctors. I realise now that I had been experiencing paranoia. My mum was the same. Once I started taking B12 I realised how stupid I had been.
B12 injections stopped by gp after 5 years treatment on nhs 
haven’t a clue nurse
Help with getting a diagnosis for myself and daughter!
Nurse Querying My Need for B12 Injections
Folate
