Welcome to the SI club! Thank you for your interesting questions.
I'm answering them from a combination of anecdotes taken mostly from here and other fora, from a background knowledge in animal nutrition, and from personal experience.
I have been SI 1.5mg in 1ml hydroxocobalamin daily for 7 and a half years. Having obviously been deficient for a couple of decades, I had very severe deficiency symptoms when I started, with unbelievable fatigue, I could barely walk or talk, had hideous brain fog and almost no memory, was losing teeth as part of extensive peripheral neuropathy, and my emotions were all over the place. Despite other health issues I'm now fairly "normal for me" and am still improving.
1) yes, depending on your activity/stress/wellness level and availability of other nutrients (because B12 processes rely on a wide range of other vitamins and minerals, any deficiency of those will limit the effectiveness of your B12).
2) It depends on the individual - what nerves got what damage, what you do and availability of other nutrients.
I'm afraid my memory of that time is almost non-existent but I can remember the first time I could feel my feet for years was quite early on. I think the peripheral neuropathy starts to heal fairly quickly and the brain fog improves, along with the devastating fatigue.
My balance, so I could ride a horse (which comes naturally to me) and walk again, came back fairly early on but it was about 2 years before I could ride my bike without having to hold the handlebars and now I can do it without having to concentrate.
3) As above. My memory of the first year is too sketchy to say really but some of the things that started to improve first are still improving now - brain fog, ability to stay awake, some of the neuropathy.
It took about 4 years before I could speak fluently again. Until then I had to think of each word or phrase as I went and apparently used to pull faces while I was thinking - a bit like I was having to solve a really complicated maths problem out loud! I still have some anomic aphasia, especially if I'm getting tired, but I'm sure it's still improving.
The best bit is my memory is still improving. I've completely "lost" most of the 2 years that I was at my worst as I had almost no memory input then but I can now remember stuff that for a long while I didn't even know existed. Memories pop up now like bubbles and I wonder where they've come from! Especially names of people from the past and vocabulary.
I still say my memory keeps my legs fit 🤪, but life, especially doing simple household tasks, is much easier to navigate and less frustrating these days.
I think it took at least a couple of years for my emotions to stabilise - and then, having been on a mad roller-coaster where everything, good or bad, made me cry, I felt very "flat" for a while. It took at least another couple of years for normality to resume.
4) Oh, yes! Sorry! You have to learn to pace yourself, or if a big event makes pacing impossible, then you have to manage your life either side of the event (basically so you can sleep for most of 24 hours before and 48 hours afterwards or whatever it takes).
Look up "spoon theory": it is a very helpful way of picturing your need to plan things. Some days you naturally have more "spoons" than others but on the whole they average out across the days.
5) For life if that's the frequency that suits you. Don't ever feel pressured to cut down. Don't be afraid to increase at times if necessary - but if it is, consider other deficiencies too, especially if it's not obviously due to stress or increased exercise.
Some people have used 3mg/day in 2 injections for years to good effect. I also know of some people who have been injecting daily for decades to their advantage. Whatever suits you is best - we are all different.
6) Yes. People need all sorts of different interval frequencies, from twice daily down to the NHS's 12 weekly.
7) Possibly either, especially in the early stages, depending on the individual, their attitude (degree of accompanying placebo/nocebo effect), or what they've been doing in the time since their last jab. I think, in pretty much all cases, this settles out over time as you get better, work out what is the best jab frequency for you, and become blasé about sticking a needle in yourself so you don't get any adrenaline kick.
1. Once reversing out symptoms subside, do they ever return while self injecting every other day?
A: Yes, but really only if I stop injecting or reduce the frequency.
2. Which symptoms tend to clear quickly?
A: none. just as it took a long time to get depleted, it will take a long time to get better. And as you heal things get worse because all your dead nerve cells come back alive at once; once through that phase, it's a slow but definite climb to being back to normal.
3. Which symptoms tend to take longer to clear?
A: Brain-fog and energy would be the main two as I still don't have 100% normalcy there. I also had a high resting heart rate that took a long time to get better but that is resolved. I had a pounding heart nightly that almost caused me to go get checked; however, that resolved after a few months.
I lost a lot of muscle, thus why once I got more energy. I was inclined to try and gain that back through exercise but only after I got far enough to where my energy levels were good; this took 1.5 years. Even now, when I push it to far, for too long, I deplete my stores despite the daily injections, thus I either have to do more frequent injections as in twice daily so as not to just pee out the extra dose or back off on the exercise. I do a little of both. However, this has got me to a level far beyond what I ever thought I would be able to do. Honestly, I was stagnant and the exercise, even the mild walking, felt like it helped me process the b12. Again, exercise, however mild, should wait until you really get the energy level back and some stores built.
4. Does overdoing it (because you felt a glimmer of your former self!) exacerbate symptoms?
A: Absolutely!!!! I did 10 miles on my bike and ended up back in bed. You must be good to yourself; take it easy. I went back to NO exercise until I rebuilt some energy (about 2 months or more) then did easy 1 mile walks ( about 6 months). and went from there. I now inject 2ml / day still after 2 years but can do quite a bit of exercise. I do have to take breaks. I'll never be the same, but am quite happy with progress which I feared never would happen. Stay the course but take it in gentle strides.
5. Over what period of time have people self injected EVERY OTHER DAY?
A: 2 years, I now do daily but I am using cyanocobalamin which supposedly requires more frequent injections.
6. Does anyone self inject EVERY WEEK? EVERY MONTH or some other interval?
A: Nope. I have had this problem for 2 years and have yet to be able to inject weekly and believe me I tried. I miss a day and I can tell.
7. Do people “buzz” after an injection or feel sleepy?
Initially I buzzed, so I took it in the morning, but now I don't feel any significant reaction.
Good questions. This will help you know what to expect. Everyone is different in how long it takes and what it takes to heal and how much they heal, but at least you have something to go by.
Thank heavens for the b12 injections and the support here.
Thank you for such an honest and open response. It made me cry. It gives me hope that I will find my former self. At the moment I am struggling to even get out of bed as my mind want to do things but my body doesn’t want to. I will need to get more B12 because I don’t think I will be able to go to once a week next week as planned as I still can’t last 48 hours. I wish you well and I will start walking as I used to enjoy walking. Thank you again.
The key to this is be good to yourself. understand that this is a new norm. accept it and don't worry about those in your life who don't! We do and we understand. there is a wealth of community here that is priceless. Scale back your expectations. I had to just fake it through work and then lay in bed, in contrast to my normal hard driven achiever pace. It was hard to accept. But accepting it will help. Then you can set better expectations of yourself and feel better about the journey. You have several things going for you:
1. your injections, and can't reiterate enough what was said by deniseinmilden who hit all nails on the head in every which way... don't ever give into ANY pressure to space out your injections.
2. You have a diagnosis and hope in the success stories of others
3. This community and the wealth of support and medical information provided. I love the science backed information because I don't believe in magic along with the experiences people provide.
You are on the right path, now just need to get frequent injections.
either hunt for a doctor that will give you that or buy your supplies online once you have been trained by a medical professional to do the injections. I would have them train you.
thank you again. I am self injecting and have managed to overcome my needle phobia. I am/was a driven high achiever in work and play and was always on the go. That’s why the contrast is such a shock. Thank you for all the advice. It’s invaluable and incredibly appreciated. I am self employed and the only income to my household so I need to reorganise my life. Thank you again
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