I'm interested to know if those with PA or B12 deficiency that went untreated have any of the following:
Hyper sensitivity of sounds, lights, smells, even touch and tastes.
Hyper sensitivity to other people's emotions.
Difficulty in crowds due to above sensitivities.
Feel as though you lack boundaries with other people and or overwhelmed by their energy.
Excessive empathy, which is actually due to lack of boundaries.
General feelings of nerves on edge.
I ask because it seems perhaps linked to the myelin sheet business. But I'm no Dr so am curious if anyone has these things which I've never heard mentioned.
Thank you for reading.
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Yahaci
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Yes absolutely! I had all of those. Already from a young age. The lack of boundaries is an interesting one - I never quite formulated it like that in my head but what you say is spot on. My mother also used to tell me i was too "sensitive" and seemed like I was never at peace. I felt the same, and the hypersensitivities reduced significantly or went away totally with sufficient B12 and folic acid. I also feel more "solid" in my own skin. Boundaries are also easier to establish - I suppose that takes effort so it also fades when untreated.
The one thing that actually got worse was smell hypersensitivity. I can smell like a shark now 🦈😂 It's rather quite annoying but I don't react as violently to (most) smells. My sense of taste is also better. I attribute both to healing nerves.
I have another one not on your list: creativity. For years I had been complaining that my creativity was slipping away. Well what do you know, B12 helped rescue that too! And my sense of humor!
Wow, you're so self aware and right, I think my taste/smell were also blunted while deficient. Which isn't a bad thing given my cooking :-).
Creativity too was non existent. I have put it down to the limited energy, which is conserved for essential things (like eating) and the brain dysfunction.
I've had 3 injections and am beginning to feel a tiny bit more groundedness. Like you I'd been a sensitive/intuitive child however that had a different quality to my deficiency symptoms which were like being an human antennae that never shut off and I wasn't contained within my skin.
Not being a doctor where B12 deficiency or Pernicious Anaemia are concerned , is certainly no disadvantage Yahaci ! In fact all the help I’ve received with my PA has not come from doctors ! It’s come from this doctor-free forum !👍
I don’t have any of the above , after not being diagnosed for many years , but i have an irreversible symptom . Namely burning feet ( not to the touch ) That’s how they feel , although they sometimes feel as though they are freezing . Also i feel as though I’m wearing shoes that are 2 sizes too small , and that there’s a band of steel around my ankles .
8 years of self injecting weekly has made no difference .
Can relate to the feet, mine have pins and needles, numbness, burning and freezing, they happen at different times. It's why I cannot walk. I have to go to hospital tomorrow the thought of the long walk (5mins) brings on pain. My sis recently said my feet were always hot, yes when I was a child. That's long gone!
I think what's happening is that with little energy and blood flow to the brain; you can only do things that are habitual, there isn't spare mental capacity. Repetition is easier, going A to B without seeing other possibilites. It's like only a few neural pathways are operations, and they are rather narrow and limited. Which can resemble autism.
I got smells completely wrong - and could no longer read expressions on faces, even ones I knew really well. People confused me, and sometimes needed to get away from all of them, go AWOL for a day. The relief of not having to try and work out what they were saying and whether they really meant something else or not !
I also lost autopilot - so had to think through everything or get it wrong/ forget if I'd done it: from cleaning teeth to putting shopping away. Left me exhausted.
Interesting. Not being able to read expressions or misreading them sounds like an autism trait, which I think b12 deficiency mimics. Not dealing with people real time is always a relief.
''I also lost autopilot''
I love the way you put it and can relate, its become quite habitual, when I catch myself, I try to stop but it doesn't work. Rather like giving an alien a set of instructions on mundane tasks. ''Now put the pan on the cooker, turn on the gas, I must be careful not to spill....'' It's as though everything is reduced down to the most basic steps. It also applies to talking to people, my speech can be quite slow, deliberate and pedantic. I'm sure people think I'm talking down to them, so often get their backs up.
Love hearing people's experiences, because living with them one can easily normalise them, and think everyone else is odd.
If I'm at my worst, when people speak quickly to me, my brain cannot keep up - so the words all join up and become meaningless. Literally "talking turkey" ! Made going to GPs difficult - they start talking quicker and quicker as you near the 10 minutes, don't they ? (or did, back in the days of appointments)
As for more than one voice ... this is why I had to give up teaching.
I spent 10 minutes yesterday in the kitchen walking round with a sharp knife in my hand, eventually my husband asked me what I was doing and I said I just remembered I was looking for the dishwasher. He looked rather relieved!lol
I sometimes catch myself repeating, in my head like a mantra, "Let me think, just let me think..." when stuck with a blank brain. Not that it helps, but is a command to boss hub !
yes to all of these in some shape or form but Ive been on B12 injections for nearly 20 years and they symptoms go shortly after an injection and return when I need one. I was on a regime that was working largely but things have recently started getting worse again.
Hyper sensitivity of sounds, lights, smells, even touch and tastes.
bright and flashing light and too much noise bother me, I cant have the radio or TV on and listen to people talk at the same time anymore, I hate noisy places where they are echo-y like cafes or restaurants and I have a whooshing sound in my ears. I smell things that are not there - mainly cigarette or bonfire type smells but Ive also become very sensitive to the smell of perfume on other people. Touch and taste I haven't noticed but with regard to eating I digest food and have less stomach issues when my B12 injection has been done, it gradually gets worse as the time passes to the next due date.
Hyper sensitivity to other people's emotions.
OMG yes, Ive always been "accused" of being sensitive but when my B12 is low I feel like I'm being bombarded with other people's emotions, I feel myself shutting down and avoiding people to avoid situations, I stop reading the news and cry at every animal meme or advert even if it is nice and warm/fuzzy and not just sad!
Difficulty in crowds due to above sensitivities.
I thought this might be a pandemic leftover but yes I now don't cope well in crowds and have to leave when my B12 is low as I get anxious and have had panic attacks. I cope ok when my B12 injection is recent.
Feel as though you lack boundaries with other people and or overwhelmed by their energy.
Excessive empathy, which is actually due to lack of boundaries.
General feelings of nerves on edge.
I hadn't really thought of it in these terms - I'm conscious that I become very introverted and hermit like when I need my B12 and I actively avoid some people who are overly negative, critical or argumentative.
Interesting about the points others made about creativity - yes I feel less creative when Im low on B12 but Im also iron deficient and basically just feel crap most of the time anyway.
I feel better already typing this "out loud" so to speak so thanks for raising your question! I'm constantly having to remind myself to be kind to myself and care less about what others think..
Hard not to care what other people think; when our nerves, so kindly, tell us whether we want to know or not.
I've been refusing to watch the news, because it triggers me badly. I'm also a hermit, hard not to be given the sensitivities.
It is always cathartic to write things down. It's also very reassuring to know other it is other people experience too. Interesting how smell and taste seems to be the opposite and less sensitive. I sometimes smell burning too, and worry something actually is.
So I'd say these myelin sheath thingys are like our nerve defence system, without it we're susceptible to invisible energies. (Other people's emotions are like energy)
It's really interesting to me what you say about being "susceptible to invisible energies" because when I have acupuncture I can feel and describe feeling the 'qi' incredibly accurately to the point where my therapist is sort of weirded out, and as I was getting worse over the last few years (I was diagnosed and started treatment early last winter), my cat would literally jump in the air out of a dead sleep hissing if I was stressed or getting upset watching a tv show. Sometimes if I was having a bad dream, he would start hissing in another room of the house. I think my energy was less contained by my nerves.
I bet it works both ways, to a certain degree. We absorb more and we contain less. If I'm really struggling with something that's emotionally disturbing, my cat will still start twitching in his sleep. He helps regulate me so I can stop engaging in things when I get too overstimulated.
Gosh I never thought of that, we emit our energy out. I absorb other people's whilst losing my own. Which contributes to a drained feeling. You're lucky to have a cat who is a barometer of your nervous energy.
I had accupuncture when I was at my worst. I would flinch and feel pain when she put in a needle. She was weirded out and said 'but I haven't put it in yet'. I felt all the sensations, so thought she was lying to me. As I was interested in meditation etc. I thought it came from that, but had a eureka moment today and thought no, my awareness has a physical reason, its nothing ku ku.
That's strange you mentioned the smell of something burning. I do too, on occasion. I frantically go looking but end up thinking something must be short-circuiting in my brain.
Hi Yahaci, almost all of those things you asked about describe me. Like jade_s they started from a young age for me and have progressed over time. I feel like often in 'official' descriptions of b12 deficiency or pernicious anemia, loss of the senses is listed, but for me as my disease progressed I was becoming more and more hypersensitive to the point where I couldn't tolerate physical treatments like gentle massage, acupuncture and craniosacral without being so overstimulated I literally couldn't sleep all night. Then I would end up having massive crying meltdowns unrelated to sadness, just purely because my nervous system was SO keyed up.
It's interesting other people are talking about their sense of smell being restored with b12 treatment, because it happened for me too! It was kind of weird, like I have this super crisp memory of being in bed upstairs smelling my fiance's cinnamon oatmeal downstairs quite far away. I texted him to ask if he was having oatmeal and he was like "Yea, I just made it!"
Yup, I feel on edge when B12 deficient. Like every cell in my body is crying out. Feel much more settled, solid and less easily disturbed with sufficient B12.
That's really interesting. Just now I was thinking I feel a bit more grounded. And thought it may have been due to some other new medication. Good to know it may be b12. I sort of lost myself, like I can contain my energy and it just dissipates. In crowds, I get very overwhelmed by other peoples' energy. Less so today.
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