I'm just over a month into EOD injections.
One of my main symptoms is odd feeling soles of my feet and weird sensations in my feet (I described them as the feeling of blood flowing) but is probably just "pulsations".
Within a couple hours of a 1.5mg Hydroxocoblamin injections - my symptoms seem to disappear but on the day my injection is due again they are back.....
Is this just in my head or is this possible?
I think most of us get these strange sensations in the run up to the next injection Madman070578 . In fact sometimes some symptoms appear to get worse before they get better.
Do you have any idea what your folate level is as this and the B12 you are injecting help to make healthy red blood cells,
I am not a medically trained person but have had P.A for over 52 years.
I wish you well
Thank you clivealive I was just surprised that I reacted in a positive way to the jab so soon after it being administered and by the next day the symptoms were more prominent again. (And the fact it can be so up and down even with EOD injections).
I was given 4 loading doses in late October, and given folate tablets to take after the 2nd jab.
When my bloods were tested at the end of September my b12 was 2000 plus (I know it should have been retested) and my folate was 20.
I saw a specialist in January and started EOD injections, folate and Vit D. I’m a month in.
initially my b12 was 125 and folate was 2.6 when diagnosed.
Retesting B12 levels is meaningless after injection treatment is started.
Are you in the UK? I'm just off to bed so it's goodnight from me
Thank you for your reassurance clivealive . Yes I’m in Wales. Sleep well
Of course, it is possible and probable Madman. Exactly, as clivealive has said.
Our bodies tell us lots of things, we mainly ignore it because we are too busy with our lives. Being really, really, really, ridiculously good looking.*
* From the spoof film Zoolander which makes fun of the fashion industry
Diolch Narwhal. Thank you for keeping me going with hope!
Croseo Madman070578,
Please know that Frequency is non-linear. Wwwdot has given a wonderful analogy of ‘a dried field being given a little water and over time new shoots of green grass will grow.’
Farmers know about other environmental factors, such as the seasons, soils and irrigation. With PA/B12D our environmental factors can include deadlines, fixing a leaking sink at home or helping a friend. We can use more energy to solve/deal with these situations. So, we may require more Hydroxycobalamin/cyanocobalamin. Our symptoms can come back sooner.
The saying goes, The body whispers and then it screams. I must admit though, when you ask, Is this just in my head ? Yes, this is factually correct. Although, you are not imagining it. The brain receives lots of impulses, chemicals, hormones. Our minds are very clever and translates the sensations.
🤹🏻♂️
Hi Madman
It’s absolutely not in your head. When I began B12 my feet were very affected. I imagine that my body getting B12 is like a dried field being given a little water and over time new shoots of green grass will grow. The sensations in your feet is like the grass growing and it then needing again more water.
I started on EOD injections a little over a year ago and I have improved so much in the last year that I am now on several every day. 🙌
Now I realise that what I call progress of injecting several times a day may sound counter intuitive but on EOD, my body was craving (ie symptoms came back) long before the next injection. I kept a symptom journal and I noticed that by responding to my body’s needs it began to heal more and more BUT as I felt better I began to be more physically and mentally active which shortened the period of being symptom free between injections. I responded by shortening the time between injections whilst also keeping an eye on co-factors and nutrition.
This time last year I was a mess, spent almost three months in bed in pain, feeling scared, tired and constantly crying. Contrast this to now where I have done a 6 mile hill walk! Yes I felt tired afterwards for a few days but I did it and I did not need to take to my bed in extreme exhaustion!
Your journey will be different to mine and it’s important that you chart it (record symptoms and treatment) that way you can learn to read your body, recognise tell-tale signs (mine is aching teeth and brain fog) and respond accordingly. And remember that it took many years for your B12 decline to happen so my logic is that it’s not unreasonable for it to take many years to repair (whatever that may look like).
I am not a medic by the way but an engineer who has approached my medical situation as I would a problem to be solved, research, chatting with this forum (which is literally the university of life) keeping good records, combined with lots of “what if” thinking. The great news is that B12 is water soluble so you can’t overdose but do keep an eye on co-factors.
I apologise for the long answer but I was so encouraged by your response to B12 that it made me reflect on my journey so far.
May you journey safely to better health.
🤗🤗🤗
Great answer wwwdot. My teeth/gums hurt too. and they break.
More D3 K2
OK Thank you, OldmanD.
I now have a bite guard as I have found that my teeth breakages have been due to grinding my teeth at night. I take vitamin D and my teeth are generally good but night time grinding is not good and could also be a factor in breaking teeth. It’s only my molars that are affected by grinding and my aching teeth are the front ones.
🤗🤗🤗
Wwwdot - I’m responding to your two messages. Thank you for your long responses. It is interesting that we are nearly identical.
Before I was diagnosed with B12D, I went to the dentist because of nerve sensations in my two front teeth - similarly they gave me a bite appliance. My wife told me she could hear me grinding my back teeth, which was wearing my rear of my front teeth.
Big time grinder here too. I have a partial and I wear it every day. I put it in a few months ago and it didn't want to fit and was hitting my tooth that holds it in and the tooth shattered. It fit just fine the day before and every other day for 5 years. I had another tooth that one day was normal and a few days later disintegrated. Not a cavity but a huge hole. The dentist didn't know what it was and why it happened. He was able to save the tooth but he had never seen anything like it. So, definitely PA and D3 take their toll on your mouth.
Brilliant analogy. I needed this right now 
it took me four months of a minimum of weekly injections for this sensation to almost completely go away.
I am not a professional by no means but using personal experiences . . . . . My hands were so tingly I had really no feelings in them such I could burn myself before I knew I had done so. . . . . . . . I was a danger to myself and we had children . . . . . Was send to the RVH and all kinds of little needles inserted with electric shocks and told nothing wrong with me despite me trying my best to tell them they were not testing the right thing.. . . . . It the surface of my skin has this weird thing going on but no, out the door.. . . . my left thigh was such it felt like it was not alive or not really part of me if you will. . . . . . . . For me it was one of the 1st things to decrease and is definitely one of the 1st to reappear if I miss a few days or a week which would now be highly unusual as I have learned I need a lot more B12 etc than I'd imagined I'd need . . . . . As fast as I put it in my body I just seems to chuck it out before tomorrow .. . . . Like many things hydration is very important to this . . . . Many if not most of us are dehydrated I discovered the hard way. . . . . . And after that my B's done better with me . . . . Drinking more does not cause early loss of the B12 but instead causes better retention of the vitamins. . . . Before washing in morning and again before breakfast drink a large glass of water . . . . Before you eat again every time you eat. . . . . Every opportunity drink water . . . . Not mineral/pop, not tea, not coffee, but water. . . . . I love coffee but it has unwanted side effects .. . . . . The more water within reason you drink the better your system works in your favour . . . . . . I have mentioned hydration before and it seems to fall on deaf ears but I I bet each and every one of you a tenner that you are dehydrated I'd make money I am that sure of this so pat attention. . . . . . . You dont need a sore head to be dehydrated. . . . . . Just in case you have other symptoms not mentioned Google all the Vit B's deficiency symptom's. . . . Separately not as a bunch . . . . Not being a professional and not having had tests I can refer back to I cannot advise at all but I was definitely lacking a bit on that front although the tingling was not high on the agenda. . . . .. Lots of other things were though. . . . . . Even less research on that front than is on B12 so little to go on. . . . .
I agree, I was just in ER and was dehydrated. I always seem to be. It also causes you to pass out when you stand up. Winter is much worse for dehydration. I walk around with a bottle of water all the time. and next to my bed at night. I have terrible dry mouth and my mucus seems to be very thick. I feel that is all tied together. Not sure. Just feeling.
I also suffer with chest problems. . . . . Rather bad ones at times. . . . .I wish they could find a source of the problem same as they did with the B12D thing. . . . . Nothing worse for phlegm than dehydration and dairy products. . . . . Dehydration reduces the amount of fluids required to get the gunk up and dairy simply makes more gunk it seems . . . . I have been on endless inhalers and been prescribed antibiotics 100s of times BUT . . . . . And i am hopeful. . . . . since end of summer last year it got worse to the point I was bubbling. . . . . Pulmanary say my lungs are not flat at the bottom???. . . . Not a clue waht that means but got told that thats good .. . . . Lung function is 80% + - a little bit. . . . Was in the big cabinet thing twice and none of them know why so many infections. . . . . But all though it my best friend has been my nebuliser which my daughter bought me a fewe years ago. . . . I just used it with saline until recently when I found Ambroxol Inhalant for nebuliser use it being derived from Lung wort or Pulmanaria. . . . . I think there is a synthetic version we are getting .. . . Too long a story but so far it has proved magical even avoiding the last antibiotics. . . . Like B12 been around forever, cant be licenced so no money in it. . . . .
Yes, I can relate to this. My lungs and oxygen are usually 95, 97. Yet they are messed up, but they don't see anything on scans etc. Many types of inhalers and nasal sprays as I can fill a cup with mucus and was never like that before. My face is puffy every morning and pretty much all the time but more so in the morning. Coughing hurts my tummy and back and ribs. And I have tiny sores in my mouth filled with mucus. I can pop them. I think it is clogged salivary glands. I also get clogged eustachian tubes and ear issues. My lungs make carbon dioxide. Something about the intake oxygen mixture not being right. No one has discussed any of this with me. Just see it in my charts. My HR gets down to 48 at night according to my watch. It is not supposed to be less than 60. I also had one of those breathing tests in a booth. Nothing. I have used a nebulizer. It does work. They usually put me on that in the ER when I have an episode. Well, look at us. LOL what a mess. hahaha. We just keep on keeping on! We are our best doctors. 🥼
I take it you are in NHS land where dont give everyone a nebuliser. . . . . Buy one . . . A compressor one as it handles salt/saline . . . . . . Mesh ones dont . . . . . I am typing this with the mask on just now. . . . . . Better than the mouthpiece thingy as it give me both hands free . . . . . I am currently using 2ml of Ambroxol and 2ml of saline morn and afternoon and only saline at night. . . . . I was prescribed antibiotics a few weeks ago there at 6;30pm so pharacy closed and because the script wasnt ready until next day I thought I'd try try this no so nice tasting stuff . . . . . . I didnt have a wholeweeks gap in antibiotics before being back at GP since late summer last year . . . . . . I am near to destroyed with the things. . . . . . And they not good for liver either amonst other tests I have had of late . . . . . . I did go heavy on the ambroxol that eve as I was not on good shape and it caused me to not sleep but it also reduced the coughing to near zero. . . . . So in the morning I used it again just 4ml that time . . . Done my usual things and went and got my script. . . . . Feeling surprisingly better and really surprising to wifey I decided to leave the antibiotics fro another few hours and it continued like that and the antibiotics are still sitting along with of course the steroids . . . . . . . If I were you I'd get myself a nebuliser and use simple saline . . . . It is a bit like B12 it is very unlikely to harm you and it will get you a little relief. . . . . The solution doenst need to anything fancy just sterile saline solution that is used for many things . . . . . I cook my own now and as long as it tastes no saltier than tears it works . . . . . But to me ambroxol is magic for at least 3 weeks I think and I am getting clearer day by day. . . Not 100% and far from it but an awfull lot better. . . . But for near on 6 months I was getting worse an worse. . . . . . . Prob why I posted so much here as I could not get out to do anything. . . . .
Thanks OldmanD, It sounds like you are way worse than myself. I am in the US so medicaid. I do not have a nebulizer. I should get one. I do have a vaporizer and I run that all the time in the winter to put moisture in the air and right next to my bed. It came with a bottle of inhaler stuff. I think I have had ambroxol before. I looked and can't find i but I have seen that name. I just have Advair and albuterol. So you have an infection? so they are giving you antibiotics? Hmmm. I am afraid of antibiotics. I wonder if you actually have an infection? Do you think so? It doesn't sound like you do.
It helps to post here. It is the one place we all know how it feels to not have any doctors to rely on. Where we are not alone. I stay alone because I feel like a burden. and it is easier to be alone then to have to pretend you feel well when you don't. At least for me. Glad you have a wifey and partner. Someone to be there when you need a hug and a glass of water.
Def infections. . . . . . one just before xmas nearly had me in hospital. . . . . . Ambroxol is also available in oral form. . . . . . . cant see it in inhalant form in either ireland or uk but it is on amazon germany where I got it. . . . . Just checked there. . . . . . You can't get ambroxol in the U.S. because of the failure of the Food and Drug Administration to grant reciprocal recognition to generic medications approved by its European counterpart, the European Medicines Agency, when they have long been proven safe and effective.. . . . . Very old medicine but no money in it where you are I'd bet. . . .. . Inhalers. . . . . Bricanyl. Sulbutamol, Beclazone, Trixeo and and Trelegy with solbutamol and trelegy the current pairing. . . . . Havnt took either is over a week which is a first in may many years . . . . . and I dont know that any of them really do much to prevent anything. . . . . . Spent all of covid with a mask on . . . . . As best I know I have never actually had covid certainly never tested positive. . . . . . But anyhow. . . . . . Ye can get nebulisers on amazon and saline can be made simple if ye scarce of funds . . . Just google it. . . . .
I had no idea. Things are so different between countries. I'm sorry you suffer from this so much. The infections must be frighting. I have never had covid either. I feel if i had anything that attacked my lungs i would be in big trouble. Thank you for the info on the nebulizer saline.
Your dry mouth is the environment around you. . . . . The muck in your throat could be a sinus problem causing Post Nasal Drip which can on occasion cause chest infections. . . . . . I'd near to bet your sinus's are giving you problems. . . . There is a wash out kit available. . . . . Ye can see it action on you tube cleaning sinuses. . . . But yet again saline in a nebuliser will almost certainly clear that problem up too and is much nicer way about it but breath through your nose to get the saline in the right spot. . . . . Some nebulisers come with a little nasal attachment with them. . . . .
Anyone tested you (properly) for Sjogren's?
Not that i trust at all Bookish. They thought i had a lot of things and that was one, then they ruled it out. But my lips are always chapped and sore and sometimes purple or dark red, with a pale face. I have symptoms but they are symptoms of a lot of stuff.
Sorry. Same here, sort of. Not an easy one to rule in or out, so I keep it in mind as still a possible. Sjogren's Advocate is a really useful site, but I expect you've found it already. I hope the EOD works well for you, give it some time, and then see what you are left to deal with! Best wishes
I'm sorry you have sjogrens Bookish. I was not aware of that site. So thank you very much. I actually inject every day. sometimes more. I just started on Omega 3, three days ago and 10,000iu D3 daily. That should help a bit. If I could just get rid of this right side pain in my groin/hip. I don't dare sneeze or cough. 😮💨😮😊 Best wishes to you too.
Is this normal after SI?
Going Round in Circles - ???
Eustachian tube dysfunction is it possible this is connected to b12 deficiency?
Why is this so difficult to figure out
what is it this time? 
