Here is my (ongoing) thread to detail my B12 journey. Here goes!
2-3 years before diagnosis I began having the following symptoms. Numbness in toes which slowly spread to feet then ankles, then calves. A slow deterioration of muscle tone all over. Periods of intermittent dizziness/vertigo and fatigue. A worsening of lifelong digestive symptoms which include inflammation and constipation, decreased gut motility.
A year before diagnosis I suddenly felt my spine growing cold when I was waking in early mornings. I thought it might be my old mattress so I bought a new one, but that didn't help. My fatigue was also getting worse.
A few months before my diagnosis my symptoms increased. It seemed like everything was going wrong all at once. My foot/leg neuropathy worsened to include weakness in upper legs. My balance worsened, especially upon waking up. I also began to feel occasional nausea and shortness of breath. I was diagnosed with cataracts, borderline macular degeneration and glaucoma.
A week before diagnosis the bottom of my feet started to feel burning sensations and I began to go into unexpected rages without any trigger, no good reason. I also began having dark thoughts that would come on with intensity. I was beginning to forget words. I began to have leg cramps and not just spinal cold sensitivity. I felt waves of cool energy zipping up the back of my head.
My (American) doctor who I had seen for 10+ years thought I had shedding from covid patients, a kind of long covid. I doubted this, so In a panic I found a new (Mexican) doctor.
I spent my first session with him detailing all my various ailments, in between burst of crying.
On my second visit with my new Mexican doctor he said, I have something to help you. I didn't think anything could help but was willing to try. He gave me a B12 IV. About halfway through the IV my dark mood lifted and then I began to feel a little more capable of standing, walking and balancing.
I then proceeded to receive B12/B6/B1 injections at intervals of 8 - 10 days. I could tell with each shot my neuropathy was getting better. I began a journal to try to discover how many days would be best to wait before a new shot.
I am now on my 38th shot. I slowly reduced the intervals and find that every five days is best for me since on day 6 my neuropathy and bad mood would start up. The 5 day interval is working well for me. I am thrilled that I was finally diagnosed correctly.
I have a lot more to tell you all, and will do so in subsequent posts. I found this forum around my 4th shot and it has helped a lot.
God Bless you all.
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GracePV
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Oh , my goodness GracePV! I’m so pleased for you ! Marvellous news! So glad you found your Mexican doctor .
Are you also taking a daily modest folic acid tablet —say 400 mcg -? Works together with B12 . If you have Pernicious Anaemia , it means that you will need injections for life . I’m assuming that you are not vegan or strict vegetarian .
Anyhow ut sounds like you have an excellent doctor now . It is difficult to find a doctor who has good knowledge of B12 deficiency.
i have P.A. and have to self-inject to keep well . as I cannot get my b12 injections often enough .from my doctor . Injectable B12 ampoules are prescription only in U.K. . How is it in Mexico? I’m curious .
Do let us know how you get on We are really interested . You have had a terribly tough time. Now life can begin again for you ! Very best wishes .
Just noticed that you have no health insurance. On this forum , we have to self inject . Maybe you woujd wiish to do that also . It’s easy and reasonably cheap . It’s possible to obtain B12 ( Hydroxocobalamin) ampoules from Germany where they are not a prescription item . But can you get them in Mexico ? Would be interested to know about that !
Hi wedgewood, thanks for celebrating with me! I have taken methyl folate for years along with other supplements for the MTHFR mutation. I was very surprised when I was B12 deficient. I am sure I will need injections for the rest of my life and I am ok with it. Two of my Mexican neighbors are proficient in giving the injections so I just run to them and it gives me a chance to socialize too. My new doctor is a miracle worker and best of all only costs $35 usd for a visit. Five B12/B1/B6 injections cost about $7 usd and I buy them at local pharmacies. What I would like to take is just B12 without the B1 and B6 but that is not available here. I am happy to answer any other questions.
The B12 I take is just hydroxycobalamin and is made in Mexico. It comes in a 30ml vial and the label says "Mul-ti-vit" although the place I buy it from says the brand name is Mr Suplementos.
Hi Jillymo! Yes my new Doctor saved my life. After going over my past memories of my parents illnesses, I am fairly certain that they died in part from B12 deficiency. I may make a separate post about this if anyone is interested.
I am considering taking more frequent B12 shots but I want to learn to self inject. So far I just hold the needle above my leg while my pulse shoots up and I break out in a sweat. I'm a certified needle coward.
Self injecting isn't as bad as anticipated the first time is a victory. I am used to being stabbed with a needle and now inject daily sometimes twice a day when needed.
Try and overcome the fear, give it a go it's not as bad as you think.
Thanks Nackapan! I didn't get any blood test. The injection was so obviously working I didnt need any test to tell me I need the B12. I am ok with ferritin. My electrolites were a little low and I am hydrating more now. The other interesting test was that before my B12 shots I was prediabetic and now after the shots I am back to normal. I wonder if some people are diagnosed with diabetes and they could help their blood glucose by taking B12. ???
I was diagnosed as type 2 diabetic and fixed it with a Newcastle diet. It was not all that long afterwards that I nearly died from PA - so much for calling it anything but deadly as our new guidelines here want us to do.
My eldest Brother died at 41 which was registered as a heart attack. I believe its possible that it was PA related as for many years his health had followed a pattern very similar to my own. I also remember being arraigned in front of my Paternal Grandfather when on his death bed. I was 5 yet I remember clearly how pale and exhausted he looked and if it was also PA that might well explain some problems he had with his business towards his end as he was a cabinet maker and in those days it was all done by hand. My Daughter has a PA diagnosis and we are keeping our eyes open for my non identical twin Granddaughters. The eldest, by an hour had lactose intolerance that was fixed by omega 3 oil and probiotics. We had always blamed her poor hand washing. SO - if you you are OK about it I would like to hear your experience.
Thanks Wwwdot, It feel great to share and finally feel a part of this group. I am so lucky to have found you all. I can't imagine how lonely I would have felt if I didn't. So many undiagnosed people out there. I want to somehow reach out.
So glad that you changed doctors and got an answer. Deterioration can be really frightening.
These strange symptoms, while recognised here, are not always understood as possible B12 deficiency warning signals by the medical profession. This sometimes results in a long trek around consultants, while they search for something "more serious".
How lucky you were in the end!! Been given B12 IV . Would you know how much was given in one go via the IV. You also get your vitamin B6 and B1 via an injection?! I haven’t found those online, only as supplements. How about vitamin B9/11? Now keep an eye on your Improvements , how long they last for and if your doctor will be happy to continue to treat you this way.
I just came across this article. I am going to pursue to find combination injection ampules here in Europe. If any of you are aware of these please let me know.
How fortunate for you to have found a knowledgeable doctor, your story is what many of us in the uk can only dream about!
Regarding your IV treatment- combined b vitamins- b12, 6 & 9 (folate) are considered beneficial for injections in some countries. They are vital to lower homocysteine, one consequence of faulty b12 metabolism.
Interesting that you suspect your parents also suffered from b12 deficiency. I think mine did too. Patterns emerge when you become aware of symptoms.
I don’t know about anaemia but both my parents died early from mystery illnesses.
My mother had lifelong periods of depression and exhaustion. She often took b complex and said they gave her energy and made her feel so much better.
My father had myelofibrosis, a condition of the bone marrow that no one knew much about at the time and had no treatment for. Photos years before he died in his forties show him looking oddly pale and thin and I do wonder now if he didn’t have undiagnosed pernicious anaemia. It would explain a lot of the symptoms I was told he suffered from.
I also found the right doctors/specialists/dentists/chiropractors when I most needed them for other conditions when I lived in Mexico. My experience since returning to the UK couldn't be more different. I often wonder why I came back here. You have me reminiscing for those very different times now. If only I had neighbours like yours!
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I have taken methyl folate for years along with other supplements for the MTHFR mutation. I was very surprised when I was B12 deficient. I am sure I will need injections for the rest of my life and I am ok with it. Two of my Mexican neighbors are proficient in giving the injections so I just run to them and it gives me a chance to socialize too. My new doctor is a miracle worker and best of all only costs $35 usd for a visit. Five B12/B1/B6 injections cost about $7 usd and I buy them at local pharmacies. What I would like to take is just B12 without the B1 and B6 but that is not available here. I am happy to answer any other questions. 
How long before B12 peripheral neuropathy starts to go away?
Am I burning through my B 12,,,
B12 Injections Stopped Working?
I don't want to go down the rabbit hole again...
