This is written from the perspective of having experienced life long B12 deficiency and injecting 5+- times a day consistently for the last 5 weeks. 1 mg methylcobalamin and .25 mg hydroxocobalamin with 6 mg adenosylcobalamin SL. Which lead to consistent improvement weekly.
I am well aware that I or anyone similar does not exist and therefore not studied and what is known about others experience is at best applied to life long B12 deficiency. Good news is it is now allowed that it is rare but some people actually do not die from life long B12 deficiency. That is in the last year or so.
My memory goes back to at least in the womb but I only write about my explicit memory which started to be prominent at age 3 years 8 months.
I have always experienced clunking in times of extreme stress. I learned how to tell it was coming and would crawl off and go to sleep. When I could drive I would pull off and sleep. I used to joke that I would fall asleep if I was driving a motorcycle and probably would have.
Reasonable to assume this clunking was a symptom of B12 deficiency as it is now changing with effective self treatment.
In recent years clunking became either being able to immediately sleep anywhere or not feeling tired and yet if I laid down I would sleep for a couple of hours. Often after getting sun energy.
With the many trials of B12 injections The clunking gradually became fading. I could feel I was fading and yet it did not lead to clunking although I needed to sleep a lot to heal.
The fading gradually happened later and later in the day. 11 am to start and morphed gradually to the evening and now it is "normal" sleep.
If I walk 5K than everything sorta kinda goes back to the way I experienced in the recent past then evens out sooner each week.
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WIZARD6787
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I do wonder if I may have been low in B12 for some time too? I perpetually had mouth infections, tonsillitis and kept falling asleep well into my late teens, this then became repeated glandular fever, pleurisy and pneumonia until in my mid 40s, followed by a general struggle to keep going until diagnosed at 60 with P.A. None of my other family members ever had these issues and I don’t recall ever having my B12 tested.
Ironically, since self treating and researching factors which could potentially make my condition worse, I am feeling better than I can remember feeling in a long time.
I am following your footsteps closely Wiz because I think your are an inspiration!!!
I do not see myself as an inspiration. I see your and my sharing as a collaboration for our mutual benefit. After all it was you that came up with social interaction was a B12 drain even though a positive experience.
So I am going grocery shopping and see a vintage Land Rover which always makes me smile due the one of our first exchanges. It was yellow and I thought of Skittles in the driveway and started to laugh. Then I saw someone looking askance at me and thought about trying to explain what I was laughing at and found that thought hilarious.
I am open to doing better than I ever have. I have not written about it before but it is not easy to have all these positive changes some that are new to me. I have a story on that.
A 60 year old man who was brilliant and worked for me had one of if not the first operation on the hammer in his ear and he could hear everything for the first time. He was in my office trailer sobbing that he could not stand it. I let him sob and then said I have to go out on site and would be back in 15 min. I was lying. I had nothing better to do than be with him I just thought that was what he needed. I walked around and came back and he had regrouped. He thanked me and I told him that my office trailer and I were available to him and he would come to my trailer and process the trauma of being able to hear. He ended his career as a consultant flying all over the country fixing problem job sites. Churches.
B12 was not synthesized in the lab until 1972 so not any chance we would have got anything but misdiagnosed.
It's like you were writing about me and how I was!
I learned to be very stoic and tested myself to the extreme where I would literally black out - but not faint - just my ability for consciousness would suddenly switch off and wouldn't return until I had slept for some time.
Like you, I now fade instead, which is safer!
This is a curious health condition, isn't it! And all the more so because similar bizarre features are repeated in a number of individuals.
I SI 1.5mg hydroxocobalamin daily, and have done for 8+ years.
Good on you for injecting 1.5 for 8 years. You are a pioneer.
I am guessing the "similar bizarre features are repeated in a number of individuals." is in part as symptoms are always what physicians or researchers accept as being related to B12 and some symptoms are not seen as real or not important. I also guess that all information is based on at best the maximum of 1 mg OED and any more robust/effective has its own set of symptoms of healing.
Another factor is I feel it is a progressive condition and currently and for the foreseeable future will only be diagnosed when condition has progressed to some level of an acute condition. How acute it must get determined by the GP, county and local guidelines.
Another factor is many symptoms are seen as due to age which is a convenient explanation. According to the physicians understanding of aging I got really old three years ago and have been getting younger ever since. Which is not what happened.
In my particular case many symptoms I thought were normal until they became debilitating. I experienced peripheral nephropathy in my feet my whole life. I thought it was normal and everyone else thought so too. I know more about foot ware than anyone needs to know.
In those of us who are affected for many years, it seems to insidiously creep up on us, with us taking symptoms for granted as something that just makes us who we are, until one day being stoic can't overcome everything any more and we realise how quite incredibly ill we are - but then we start the battle for diagnosis and treatment, by which time things are really grim!
What fascinates me is how much improvement I still get - the same sort of thing as getting worse, only in reverse: things I took for granted as OK, because I thought they were as good as they could get, a couple of years ago, suddenly make a significant advancement now! Despite my being older I too feel like I'm still getting younger!
In my 20s I envied the vitality and fitness of my bosses mother, who was in her 80s, once she got a pacemaker. Now in my 50s, I'm miles better than I was then! And still noticeably improving.
Nothing like trying to solve problems when GPs are a detriment all while experiencing worsening neurological issues including brain fog and fatigue.
I have this thing where I notice a symptom is gone or improved. "Hey look my body hair is more robust than ever." Hey I do not get muscle cramps anymore." "Hey I have not had the lightning shooting pain for a long time." "Hey it is only 10 am and I have done more that I could do by 3 pm." "Hey I am in a grocery store at 9 pm and the lights and colors are not making me sick." "Hey I do not have to prepare to go to the grocery store anytime now." Etc.
I have always been aware of others feelings and see it as something I want to continue to do. I am now more aware of how I feel about other people. Not so much the love I feel for others. I do not as quickly move on from others behavior that I deem negative in my opinion.
I still have not faced how ill I was 3 years ago. I know intellectually that a hematologist stated that my blood work indicated I was 4 weeks from death and know that he stated that I had " Severe PA that is seldom seen."
I am so sorry to hear that you ended up so short of B12 before being diagnosed. It makes me wonder if that is one reason why you need it more frequently right now than most of us?
It's only anecdotal evidence taken from fora like this one but it definitely does seem to be part of the problem for people: a combination of the length of the deficiency (going by symptoms) and the degree of depletion before treatment.
An ex-midwife friend needs 3mg hydroxocobalamin injected each day and although she didn't have symptoms for decades before needing treatment, her levels had been very depleted by the nitrous oxide used in the maternity suites.
A very interesting thread. So glad your are feeling a change with the methyl and the others. I ordered methyl but it hasn't gotten here yet. I wouldn't mind knowing your source for those three cobolomons too.
I hear so many say they sleep more because of B12d/pa or even from injecting B12, get very tired. I have the opposite. I sleep maybe 4 or 5 hours a night I'm always tired. Even if I try to go to bed earlier I'm awake in 4 or 5 hours and I can't get back to sleep. Strange how we all have very similar symptoms but also very different. I guess sleeping a lot would really be a nuisance. But I sure wouldn't mind getting better sleep. Thanks for sharing your story. It is fascinating.
I agree this is a great thread and I think we are talking about a stage in the recovery process that is post basic repair, yet is not a maintenance phase.
I am beginning to question whether there can ever be a maintenance phase where we can just take enough to maintain our health?
The proposition of prescribed injection frequencies spanning days, weeks or months presupposes that :
1. the B12 we put in to our bodies is equal or exceeds the B12 we will use, AND
2. the amount we need is constant, AND
3. the B12 is available between injections.
But I question all three premises.
A healthy body is born with a primary supply of B12 and our gut (food) is a minor, secondary supply source to top us losses from the primary store. (PLEASE someone correct me if I am wrong).
So for the body to need a primary B12 store it suggests to me that B12 demand by our bodies must fluctuate - that’s what a supply store does - it covers fluctuations in demand.
It also suggests to me that the intake of B12 via the gut is relatively small as it’s a main function is to top up the supply store. It is not the primary source of B12 for a body. (Again PLEASE someone correct me if I am wrong).
So how does a system function when the primary supply store is out of order (our fuel tank is broken) and the top up source has also failed?
How does a dose of B12 meet demand when there is no supply store and we apparently pee out excess shortly after supply?
I think it may work something like this; assuming the B12 repair system has a run time cycle and when we inject that repair cycle is started. If we don’t inject before the system completes the repair cycle will stop. Imagine a single wave on a shore from a single injection. But if we keep injecting the waves of repair keep coming and the repair cycle keeps repeating.
So now we have the waves of repair but what if we also want the tide to come in and out - we want activity too! - now it’s getting harder to predict demand and hence supply because activities vary in intensity, type, duration and occurrence!
The conundrum of PA is how do we get B12 supply to match B12 demand now the system is broken? That is what we are trying to work out.
It seems to me that Wiz’s approach to answering this is to examine the supply part of the equation - how, when and in what form to supply B12.
Whereas my approach to answering this question is to try to understand how, when and why my B12 demand fluctuates.
I think we are making great progress because I think we are getting to the point where we are identifying a wider range of relevant factors and understanding that matching supply and demand is a key issue. But of equal importance is that we are gaining a better appreciation of what PA is about and feeling better in the process.
Thanks for the explanation. I definitely agree that I don't think there is a maintenance stage. I don't think there is a stage where we will find our plateau and stay there. I am so up and down. If I get active like go hiking and the things that I've been doing lately, I feel great doing it, I'm in pain doing it but it feels good as well. It's difficult and I stumble about but it also feels really good to be able to be active again. However, I think that causes me to crash after a few days and then I'm homebound for a couple of days. I feel that if we had a constant drip of B12 slowly all day long like an insulin patch or B12 patch that injects us every hour with just a little bit of B12 so that it's a constant feed. Instead of just one major dose and then we go about our day or our month or our week while it wears off. I feel our bodies use what it is going to use pretty quickly and has already peed out the rest and now we got a whole month to wait? That's crazy. Although, I inject everyday and sometimes twice if I feel like I need it. But others can't. It sounds like you are really making progress. sounds like you have landed upon a few interesting points. I can see that they make sense. One time I took a mega dose of the methylcobalamin and boy did I feel terrible at first but then I felt fantastic. The thread is here somewhere on this forum. So that's why I ordered methyl again so that I could see how I would feel on it now that I know what I'm doing. Lolol But I'm still in a discovery phase myself. I'm still trying to figure it all out. But like you said I don't think there's a maintenance phase or plateau that I'm ever going to reach and just stay there. I just don't think that this condition works like that. But I'm much better than I was. Good luck! Thanks again. 🤗
That’s only “my take” on what I sense could be happening.
I am not a medic and don’t even have a basic biology qualification!
I am increasing my daily dose to two SI per day and also increasing it BEFORE an activity such as increased brain work, increased social interaction or increased physical activity. The hard part I am finding is when two of these increases occur simultaneously such as a walk with friends. I still seem to “pay the price” which suggests the the pre and post dose was too light. But getting there!
>>It seems to me that Wiz’s approach to answering this is to examine the supply part of the equation - how, when and in what form to supply B12.
I am still holding out hope I can discover what I need to do every day so I can just follow that regiment.
I am also holding out hope that it may be the reason that I have no stores of B12 is that my body has never had enough B12 for long enough to store or that my body can heal and the storage end of it will work properly.
Does not effect my current decisions. Just a hope.
I understand. I go walking or hiking in the woods and it can be draining when I go alone. But when I went with a friend, it was very hard to keep up! And talking while walking I was completely out of breath and mentally exhausted! Talking and walking is very very difficult for me. Between pain, balance, weakness, mental exhaustion, it is hard, but I am not giving up on being active. I wish you good luck with your plan . I will look for an update as to how you think it may be helping.
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Fading away
