As an avid armchair researcher, I already have good notes on B12 deficiency and Pernicious Anemia, but a few things still confuse me. I'm also curious how our unaware GP is planning to treat my mum with recently discovered PA.
My story in short...
I've been aware of "the true nature" of the medical system since the early 80ies and was primed to researching more about it after some unfortunate experiences as a kid.
I think my mum was diagnosed and put on Metformin in the mid 90ies. This was too early for me to know of better ways, or to know it would deplete (availability of) B12. Thankfully, she hasn't been hurt by it too much in the first 10–20 years.
OTOH, I did kind of start being puzzled by a lack of great communication even 20 years ago, but considered it to be psychological. Then the last 7–10 years, she has more obviously been showing clear neurological symptoms.
Seemingly led by synchronicity, I discovered Sally Pacholok's work around 2015-2017, which intuitively felt completely on the mark and urgent to address. I now think maybe this was my last chance to rescue mum w/o leaving her with lasting neurological damage. Sadly, it seems I have failed to take stronger action, also knowing our GP would probably mock me...
After a fall/small stroke in Dec. 2022 (of which mum remembers nothing) our GP came to visit. I finally informed him of several things that are easily proven, all of which he mocked or had "never heard of!"
A few months later a neuro exam was done. AFAIK, mum was diagnosed to NOT be clinically demented, seemingly proving it's likely the B12 deficiency. I had sent the neurologist Sally Pacholok's findings, but he didn't even write me back.
Another synchronicity made me take up B12 research again recently, also watching some of this society's videos. I was reminded how PA was a good probability/symptom of B12 deficiency. Telling mum about it, unbeknownst to me, she had been diagnosed with mild PA in Sept. 2023 and was already receiving B12 shots for it.
Indeed, I felt her neuro state had been very slightly better lately. On one day I was even able to talk with her fairly normally, where she had ok concentration and understanding for at least half an hour. I did not think this would be possible again, as she usually fades out after 5—30 secs and uninterestedly wants to go do something else. This gives me hope that proper treatment may get her back to us for up to 65—80%.
AFAIK, both the occurring of the PA and her getting some good moments after B12 again prove that the B12 deficiency crowd was right all along. The "funny" thing is that the GP and neurologist are kinda proving it over and over, at the same time seemingly completely unaware...
Today, mum was in a state that she may want to keep things secret re. what is going to happen next with her GP (I don't have legal say over her at the moment). She's often negative re. things I desperately want to help her with. I also seem to be alone in this, getting "the fluoride stare" from some of her friends and family.
So this brings me to my first questions:
I'm fairly sure mum had a series of 6 B12 injections in the last 6 weeks (not sure which form; from reading around, I wouldn't be surprised if it was the lesser cyanocobalamin).
My sense is that the GP is soon going to test her B12 levels again and/or redo the anemia testing.
(1) Is there a chance these injections have given her a small B12 depot that will fix the PA for a short while, or is it by definition a condition for life that's simply going to need frequent injections? (seeing her symptoms, I suspect the latter, but it feels like the GP is hoping this series is going to cure the PA — unaware of the neuro)
(2) What do you think the GP is thinking and planning at this point?
Would he be determining how many injections she will need? Will he advise for a lumbar punction that AFAIK is not needed at all — or is it? What further blunders may he fall into, and is it 100% sure he should simply advise B12 injections?
If you're wondering why I'm not 100% sure on some of the facts about my mum, it's because I usually don't join her on doc visits. Things could get out of hand quickly, as I don't understand how these people can even live for one week with themselves, mocking things that were proven ages ago.
My plan is to ask a few questions here, then send the GP a signed letter with the proof I think I have.
TIA!
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Vitaman
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I think your mum may be suffering from paranoia which is a B12D symptom. I had it as well - I thought my partner was plotting against me. Lucky it went away with enough B12 and I felt terrible about it. I think she needs more B12 to sort it out.
However I think it extemely unlikely that the GP or consultant will agree. There is a great deal of ignorance about B12, the main one being the myth that too much B12 is toxic.
Thanks! That's interesting, as I had not come across that symptom yet in text/vids (oops, maybe I have, in the form of "delusions")
It's esp. weird to me as I always used to be "the favorite son" of two, and seemingly the only person still caring.
I have asked her several times if she is angry with me about something, and she always said no. She seems rather "uninterested," claiming she's feeling ok, not depressed. That's great, but therefore she doesn't want to be warned about the truth of the matter or how to prevent things getting worse.
I could say I kinda don't recognize her anymore since maybe 20 years or more, but especially the last few.
She's too much in awe of the GP, I guess, even though she once bought a critical book herself. In the 90ies we almost went to a lecture on vaccinations, so she *did* have a brain!
It was obvious I was ill and my partner begged me to go to the doctor but I refused. I just couldn't be bothered. Which is yet another symptom of B12D.
My partner says you should make an appointment with the GP and explain the situation to him. About her strange mental attitude etc. I think it would be a waste of time but he says you can't just let the situation carry on the way it is. I think I went through something very similar to your mum. If you like I could give you pointers as to how I felt and the medical articles that I found that linked my symptoms to B12D.
Yeah, I found my brother has it too. In our last heavy argument he had a sudden mood change — while I was trying to help him — and shouted he wasn't the least bit interested. When I replied he got up to attack me. I was fortunate enough to be able to lock him up in the room. I've since (due to many other reasons) considered him a sociopath and, who knows, a psycho killer. I now see that differently, as he has several of the signs. I'll at least be ordering some supps next week for everyone of us (I'm kind of on the edge of deficiency too, mostly in more subtle ways).
Because the GP already mocked me and thinks I'm weird, I prefer to start with a signed letter, as then I think he has to legally read it.
I'm currently collecting the many papers that are easy to find, to at least read the titles and maybe offer the GP more proof.
However, I am interested if you like to describe how things feel from the inside.
On that good day, I asked her if she didn't feel the difference with before, and seems she doesn't feel it at all...
What was also telling since a year or two is that she always used to be very thankful after I had helped her, and that is often missing now (not that I require it). I could name a dozen or so of these neuro aspects.
She may even complain if I want to help, as she seems to almost have an OCD to do the things she is used to by herself, as I guess it gives her some "grip" on the world.
Advocacy for family members is imperative. My mistake assuming you were U.K. based. I am writing as a clinician to another clinician (your GP) and I have worked in 3 different continents. So, I have amended it to be universal.
Belgium uses the Bismarck Model of Healthcare.
1) My mother has Pernicious Anaemia/vitamin B12 deficiency where pernicious means ‘deadly’.
2) She has a history of a fall which happened on [date]
3) My mother had a stroke which happened on [date] and high homocysteine levels due to PA/B12D are a direct cause of this acquired brain injury. Therefore, failure to treat PA/B12D effectively can result in a further Transient Ischemic Attack or CardioVascular Attack. Thus, causing serious further harm.
4) My mother is still experiencing [name 3 neurological symptoms] and that once treatment has commenced, further testing of vitamin B12 levels are not required. Furthermore, ordering this particular blood test is a waste of money.
5) PA/B12D with neurological symptoms is to be treated with Every Other Day injections until no further improvement.
6) Please ensure that you have undertaken a comprehensive Frailty Assessment.
If you wish to clarify anything, then please contact me via email at [your email address].
Kind regards,
Your name.
Sorry to read about your brother. You have a lot to juggle. The more sheets of paper you give a healthcare professional the more they are less likely to read. It is simply they do not have time. We do so many things behind the scenes. Teaching, research, risk assess, multidisciplinary meetings, further training. When do we see our families ? Rare event.
Yes, I'm planning to keep it as short as possible, but with references to included evidence he can choose to look at or not. I will include your points and/or a link to here.
(1) When injections give no further improvement, what is the next step? Start giving less injections until you see things worsening? (and/or find a happy mix between injection and sublingual B12?)
I've noticed we can get the exact oral ones Sally once recommended/took:
At least we are lucky to have a nurse next door who may give us a good deal
(2) I'm of course also attracted to the cheap system Sally Pacholok is using for self-injection (if I could do that for her). I'm kind of dreading if something ever goes wrong with an injection, that I would have to hate my neighbor. I'd rather learn it myself in the safest possible way — not the intra-muscular version, but the subcutaneous way.
(3) I'm confused. You seem to say you are a GP? But in another reply you said, "Not a doctor"
No, I’m a clinician which covers other health professionals. I subcutaneously self inject. My chosen vocation, people have a limited knowledge of the huge range of responsibilities that we have.
We can discuss with GPs, we can refer like GPs, we do a huge amount of emergency work, we run High Dependency Units, we have operating theatre skills, we run our own clinics, we case load, we can perform some types of scans. We can provide some therapies and counselling.
We are mainly all women and we provide one to one care. We teach, we mentor, we audit, we research and we ensure patient safety. Plus, much, much more.
Midwives become neonatal nurses and obstetric nurses in a blink of an eye that’s just on qualifying. The amount of times, I have heard, Oh you’re a nurse, no I am an autonomous practitioner and in a hospital setting, we discuss with consultants not the junior doctors.
1) For your brother and you, please ask for blood test to see your B12 levels prior to supplements. Obtaining diagnosis (or trying to).
2) First injection or 2 by a health professional due to anaphylaxis. We know what to do.
3) Every other day injections - Take one step at a time. Get the 3 of you well.
4) Exclude other illnesses like thyroid disease, coeliac disease/other malabsorption illnesses. E.g. folate, iron and vitamin D deficiency.
5) Symptoms trackers. One for you, one for mother, one for brother. You each have individual symptoms specific to you.
6) Think of injections/treatment like food. You need it to sustain you. So, your frequency is your frequency. You may need it to increase at certain times due to deadlines, hit by a virus, increased activity. Moving house.
7) We all are different age, gender, height, weight, build, severity of symptoms and length of deficiency. Think of it as your each individual fingerprint. Some people have to inject twice a day, others every 8 weeks.
Ask the nurse to teach you to self inject when you have got above in place.
PA does run in families. I was very aggressive as well with frequent mood changes. I was worried I was bi polar as my mum was diagnosed with it. But bi polar is also a symptom of B12D. I now think my mum was misdiagnosed, she didn't have bi polar but PA. She always complained of strange feeling in her legs and was very unsteady on her feet. She was a very clever person but appeared to lose her intelligence - she couldn't even work out how to use a mobile phone.
I also suffered from loss of intelligence, simple things baffled me. I was so happy when B12 started making me better - I think it was the equivalent of gaining 30 IQ points. I felt like a genuis in comparison.
I understand what your mum is going through. B12D is insidious. As well as many physical symptoms it also altered the way I thought. I was very depressed. I couldn't be bothered with anything. Some days I didn't even do my hair or get dressed. But I didn't think anything was wrong. I had accepted my new state. Which is why I wouldn't go to the doctors.
Thanks, "good to hear." I'm replying more on mum soon.
On the aggression, did you feel you could have killed a person, or some sense still left?
Me and bro hardly have the best relation and avoid each other, so that's a factor too, but I certainly felt he might have killed me when his mood changed. OTOH, a year or more before, there was an instance where he controlled himself still.
Seems he had been irritated with some noise he had heard from me (I was not even aware I made it). We were actually on good speaking terms in that week, so it was extra surprising. So I come downstairs and he takes off a shoe threatening to beat me with it, but held back. I was just shouting, "Huh? Huh...?? What's the problem so suddenly?" He wouldn't say what it was about. In his mind it all seems very clear I did that to irritate him (I had been cleaning something on the floor above, making a few thumps).
He's just projecting "like crazy," a word he loved to use in his better days when analyzing others. A year ago I went through all the signs for sociopath and they were all there. Now I'm wondering how many may be B12D.
I acted like your brother. I would get irritated by some minor thing and become so aggressive I frightened my partner. Which is totally out of character. It doesn't happen now, I am back to my normal easy going self.
However I think you shouldn't be 100% sure it is B12D. It could be caused by something else. I responded well to B12 and was back to my normal self within 3 to 4 weeks. Maybe you can convince your brother to take B12 and see if it works. I find oral B12 works for me if I follow a certain protocol. I have mentioned it in previous posts and I can message you with the details if you want.
Yes, feel free to message me, as I am on the verge of ordering oral supps and was thinking of ordering a 5,000 mcg version for him.
Getting him to a GP may be next to impossible for several reasons, but I do think he would take the oral ones. I'm afraid there's no one who really cares what he does or not, but for good karma reasons I will alert him clearly to it once. I do kinda owe him one. Sally's book was in his view for the last weeks, so I suspect he has at least read the title.
As I don't or can't watch my brother much, I only know a few of what I suspect are B12D signs.
- the neuro stuff I already described
- delusions about me doing things I'm not, while he has done them more and conveniently forgets that (another case of projecting). This also fits a sociopath symptom. They have separate rules for others and themselves (more than "normal" people have).
- physically, he's been dragging his feet for years, which I found weird until I noticed it in B12D symptoms.
- I was also surprised to at one time notice he could hardly speak anymore. He's a loner type who doesn't have friends anymore (he proudly broke with his former best friend years ago, for no good reason at all— crazy). So he either forgot how to properly speak, or he may have the B12D swollen tongue...
- I also remember me thinking he looked half dead even many years ago, so maybe that could be anemia. It's also a look you can have if you're masturbating all day, but that I don't know...
I totally agree with charks, PA/B12D is familial. I do understand that it is must be very difficult for you with mum and brother.
I will disclose a story. My elderly maternal grandfather became delusional at home. My grandmother rang the emergency service and my grandfather was taken to a psychiatric hospital. Our family arrived, the doctor came to talk to us. We were told the Plan of Care. Then the doctor was challenged, Have you actually reviewed him in person ? The answer was ‘his blood results are fine.’ ‘So you have not seen him in person ? ‘ The doctor was frogmarched to my grandfather’s bed. Just by looking at him, he apologised, we put an oxygen mask on him and propped him up. My grandfather’s lips were blue.
Then they arranged for transfer to a medical hospital. They had not taken into account that he had End Stage Congestive Heart Failure. Lack of oxygen to the brain causes delusions, paranoia, visualisations, auditory hallucinations. Different areas of the brain are responsible for different things. If you place your hand on your forehead, the frontal lobe is responsible for judgement, controlling impulsivity. If this area is affected then people can gamble, start fights, be promiscuous, go on ridiculous spending sprees and have personality changes.
My grandfather was put into an induced coma, he received appropriate analgesia, he was bed bathed and shaved. The staff cared and nursed him. He died with dignity. None of that would happen in a psychiatric ward. They would have given him antipsychotics and mood stabilisers. Possibly ElectroConvulsive Therapy and we would have barely been able to see him. He would have been just left, in terrible pain, unkempt and soiling himself. His physical symptoms ignored and explained as Medically Unexplained. This means his poor Mental Health was causing his shortness of breath, he was just lazy and socially inept.
P.A./B12 can and does cause lack of oxygen to the brain. So, your brother’s brain is shutting down. He needs a neurologist not a psychologist or psychiatrist. My grandfather served in the Second World War in the Navy.
If you search under my name, I have posted regarding Delirium which some Health Professionals forget. The ACRONYM we use is PINCH ME and there’s another post on Mental Health Day. I believe it is U.K. based but choose what is appropriate for your brother.
I obviously attend my own appointments in casual wear and I do not say what I do for a living. The last neurologist I saw when he found out nearly fell off his chair. Then I checked what had or had not been done. I asked how he was coping with his work load. I wished him all the best but he has no idea that we move in similar circles. My city has one of the largest neuropsychiatric research centres in Europe. 😄
Thanks for sharing At first I was sceptical re. "familial," but now I'm afraid you guys might have hit the nail on the head...
My dad's mum had dementia, and even "before" was always considered to be weird. For example, she would come here by bicycle, drop something off and be on her way w/o coming in, kinda leaving you, "Huh?" She was also paranoid and always accusing grandpa he was seeing other women.
His dad in latter years would be "out of breath" easily and wheezing (possible anemia). He also had a ton of mini strokes. Not sure what he really died from. A very long time ago, they lost a daughter to leukemia (if that was a correct diagnosis). My uncle seems fine, although we've not had contact after, say, age 66.
My dad died age 57 from Non-Hodgkins lymphoma. As one of the symptoms was strong itching in his neck, I have always suspected the contrast fluid injected into his neck when he got an exam after a brain bleed a handful of years before. He had a history of obesity and too much candy/liquor (just for taste, not to get drunk). Even earlier he was a chain smoker (2 packs a day), but eventually quit from one day to the next. He loved reading and amassing knowledge, like me.
Mum had the regular anemia as a kid. She had many nosebleeds before they fixed that and was prescribed iron pills. How her brother is really doing nowadays, I don't know...
Her dad had diabetes, had major veins replaced, had a major stroke or two, and, I think, years later died from heart attack in the ER. He was a baker, could always eat more, and loved to add tons of salt. Despite his problems, I always saw him as the healthy one.
Her mum was the type that did a ton of meds, but I can't remember something related to dementia or anemia there. She was the type that loved to critique her husband all day long, a man that in ways did nothing wrong, so maybe that's a small clue here?
Anyway... You may see more links than I can. I guess it's mostly visible on my dad's side...
Me, I was unable to stomach meat or fish from an early age (with a handful of exceptions) and have therefore always been vegetarian. I only have about 4 eggs a week, daily cheese and real butter (if I think of it). Bro has a little more. Mum eats "normally."
Draw it out with a template. Please note that there are 200 anaemias so put Iron Deficiency Anaemia or IDA. I am not a Haematologist but there’s one in the family and there is absolutely no way that I could possibly have their knowledge or skills.
Autoimmune diseases are genetic. Coeliac disease is found on Chromosome 6. I need to study more in this area. Sorry to read of your dad and a girl dying of leukaemia.
Interesting about your maternal grandfather adding tons of salt. Any cravings ? is a question a midwife asks because they are linked to deficiencies and particular conditions. I must admit I have forgotten the name of it but will look it up and get back to you. Your body is telling you a big story by you only being able to be an ovolactovegetarian.
The saying goes, The body whispers then it screams. Vitaman, you need to talk to a Dietician. They know their Biochemistry far better than me and a huge amount can go wrong with the gastrointestinal tract. Please google the Gut-Brain Axis, you will start to understand you, your family, your family history and their symptoms and deaths.
TIA’s are mini strokes and CVA’s are CardioVascular Attacks - the big ones.
Right must feed self. I have a very limited diet. Like you not through choice 🥳🥳
Nutrition has been taken off the medical students curriculum. So, that is not their fault.
1) Then the laboratory are told at what level to flag the result of a low B12.
2) Then doctors are given poor information and given algorithms by an NHS Board to follow for treatment.
There is quite a lot of internal politics, with good doctors being told off being threatened with being fined.
I do hope you are able to attend an appointment with your mother. It is definitely worth joining the PA Society on behalf of your mother. I have undertaken this for a family member. Many years ago, I wrote on behalf of another family member stating I noticed the decline in their health, I gave symptoms and how it impacted their quality of life. I reminded them that a GP appointment was only a 10 minute snapshot and not a true reflection of their state of health.
I recommend that you do the same. Explain that you are under the impression that :-
1) Your mother has Pernicious Anaemia/vitamin B12 deficiency where pernicious means ‘deadly’.
2) She has a history of a fall which happened on [date]. I am fully aware of NICE Clinical guideline [CG161]. Falls in older people: assessing risk and prevention.
3) Your mother had a stroke which happened on [date] and high homocysteine levels due to PA/B12D are a direct cause of this acquired brain injury. Therefore, failure to treat PA/B12D effectively can result in a further Transient Ischemic Attack or CardioVascular Attack. Thus, causing serious further harm.
4) Your mother is still experiencing [name 3 neurological symptoms] and that once treatment has commenced, further testing of vitamin B12 levels are not required in line with the British Haematological Society. Furthermore, ordering this particular blood test is a waste of NHS money.
5) PA/B12D with neurological symptoms is to be treated with Every Other Day injections until no further improvement.
6) Please ensure that you have undertaken a comprehensive Frailty Assessment as per NICE guideline [NG16]. Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset.
If you wish to clarify anything, then please contact me via email at [your email address].
I will study and take from your points to include in my signed letter.
Re: "Nutrition has been taken off the medical students curriculum. So, that is not their fault."
I would be more forgiving if I didn't know in advance I would be mocked for anything I say Such people deserve to lose a court case by default, as it's doing at least three things in mere seconds:
* It's risking a guess that I'm in a certain lower category of people that think some random paragraph on the internet proves everything, while every group has layers and, let's say, the top 10% do know a thing or two.
* Just by the mere fact it's extreme black & white reasoning, it is usually wrong and dumb
* There are quotes about the ignorance of mocking something you haven't even looked at... They should know they don't know everything and give someone a chance.
When I told mum she may need injections every other day for a while, she said, "I'd rather die!" 😄 (so I have that from her) This while she's not even afraid of shots! Just being a contrarian...
Neurologically, I've been gathering some symptoms that have been bothering me for years from mum (they are not this bad *all* the time) and a few positive things...
- It's like her true personality/soul has mostly left her. There may be moments where I can catch her in a better state, even still have a laugh, like in the morning in bed. She does still laugh on the phone or with friends. Maybe she does hate me?? (but not when I ask her)
- I suspect mum's personal hygiene is fine, but she stopped cleaning house as much as she used to, dishes are less clean, ... She recently said it's by choice though, as no one visits here anyway and she doesn't like cleaning (I do help with that, or we would live in even more cobwebs). I enjoy this change, as she used to spot every mark on my clothing or face and comment. In the end, I still think it's a little weird just how much she has backed off.
- Mum would once be the first person to throw food away if the date is due. A few days ago she was eating cookies that looked like they were half eaten away by mice in the cellar (and probably were). She didn't care and was angry I threw some out.
- Since a year or two, I too often see she has let food burn into the cooking pan. Any pleading to *always* use a timer, or health warnings, she totally doesn't care about.
- Re. fine motor skills, she's usually unable (or not caring) to close doors normally and often somewhat slams them (OTOH, I'm extra sensitive to unnecessary noises). Breaking things still seems well within limits.
- (As mentioned before) She can be a contrarian to any good intentions or info I have.
- Memory can so bad, esp. since a year or two, that it's hard to believe and I'm like, "Mum? REALLY?!?" OTOH, I have first signs of it too. I have to look up names/things more that used to pop into my head before.
- Terribly short concentration, making me feel as if she hates me and wants me gone asap. Anytime I want to show her something for 5 mins, she *always* has something going on that she wants to get back to. My real mum would love to have a great conversation with me, but that's like 10–25 years ago.
- At the same time, she has poor understanding too. I do sometimes think she gets it, but soon after has forgotten it, so I can not build on things I taught her.
- Mum used to be the very thankful type. If you would help with the dishes or household, she would radiate thankfulness. This has 8/10 disappeared.
- If I would join her downstairs in any room, she used to be the type that immediately makes eye contact. She doesn't play games ignoring you. In the last few years, I'm sometimes waving my hand in front of her, like, "Hello? Is somebody there?" I think it's also cos she needs to concentrate on one thing, cos that's all she can still do — No more multi-tasking. She probably also suspects I'm gonna tell her more things she's not interested in
- (As mentioned before) It sometimes looks like she has a very subtle OCD, IMO preferring to keep doing all the stuff she is used to, to keep a grip on the world. I've also heard it can be caused by serotonin (*not* the Happy Hormone they tell us), which in turn can be caused by endotoxins. Probably helped by the "side effects" of Metformin, she has some of the smelliest poop I've experienced. I'm sure this alone is a drag on mental health... Here too, I should have tried things ages ago.
- A physical B12D symptom she's had for some years is the mouth corners, but not anymore.
Some positive things...
- She does the stairs to the first floor many times a day, and AFAIK she's not out of breath from it. It's also a miracle to me how she's not falling from the stairs.
- She still likes to do her own shopping and most household work, can enjoy TV and likes word games in the newspaper.
- Today I discovered she had actually been reading in Sally's book! Some ten pages.
- I believe mum when she says she's not depressed. I know depression is also common in low thyroid, which I think she does not have and is one of her "health secrets." I think this is also the reason her cholesterol is ok. At 82 she may be among the few that is not on statins. However, she can totally look depressed, and I've asked her a few times. I've read something on "mask of Parkinson" which may be a factor, kinda like the face is just hanging there and there seems no joy in the person.
- She does not have many of the other classic symptoms and still sleeps well (on an inclined bed since 3 or 4 years — IBT).
I have not read, I have 2 extremely busy days a head of me therefore cannot reply. It does not mean to say that you are ignored. I just have to prioritise my work. I have deadlines for my work.
Plus, it is imperative that us clinicians have work/life balance. We can get burnt out, suffer decision fatigue and compassion fatigue. People know what we do, so neighbours knock our doors. They need our help before ambulances arrive. Stuff happens in streets, supermarkets, so we step in.
Me, I rarely answer my phone. I shut down electronic devices. I am non-contactable because I need, Me time. I will always put my life jacket on first before I help anybody else.
No worries at all! I was not grilling you yet 😜 I was specifically not posting this as a reply so you would not feel personally addressed. I'm just adding stuff that seems related or comes up to me.
As I've started watching more vids on the PAS YouTube channel, more questions are coming up. I will also look around for a "basic course" or maybe get Martyn's latest book. I don't mind doing the research — on the contrary, you can point me to articles — but I'm mostly already doing it in my own awesome archives. This leaves me with some questions/confusion until I get all the basics somewhere. I will be probably be studying things every day from now on.
I also need a few days to let things sink in from your previous reply (brain gut axis, etc.), and will first be working on the letter for the GP.
I've also realized more telling events in my own past, like four smallish surgeries as a kid, but if nitrous oxide was used... I did develop grey hair fairly early (as did my mum). As a kid or teen, I was also mocked sometimes for being kind of pale, but still "within limits" — not a dead man walking 😜 In 1988 I received 5 Vit B shots for an anxiety related thing that wasn't too bad.
Thankfully, I've had a seemingly healthy enough life until a few months to a year ago, where I think B12D symptoms have started showing. I may make a list and thread on that later, to see if you can relate some things where I don't see a connection.
I've done this kind of support a lot myself (on misc. topics), so I know that even a smallish post can take an hour to properly word and source — for little to no thanks in return... I suspect you are a gem in this community, but I would hope you are not alone and there are two to five who can provide this type of help. Or maybe it is manageable. I don't know how busy this community is yet... I'm certainly not gonna let you sit around doing nothing! 😜
I don't want to cause anyone stress though. If I'm really desperate for replies, I will beg.
That is one starting point, why did treatment not continue ? I scan work on here.
I am non-clinical now, so I do not work in a hospital. I undertake Data Analysis via a meticulous scrutinising of notes. People get the wrong impression about people who audit. It is not personal, we are just objective and find facts. One piece of paper can send us on 10 different paper trails which all have to be individually inspected.
A few weeks ago, I rang a hospital as not all the notes were not sent. I spoke to a few people, each person passed me up and that lovely hint of anxiety was heard in their tone. The last person who did actually engage with me, asked me where I was calling from. I was truthful and polite.
I do not do stress. I have always been this complete weirdo who loves to chill out in nature, a movie, a book. People believe I am too blunt or cutting. I am introverted with a whacky sense of humour and a vivid imagination. I love being me and am a huge Star Wars fan, so I use the Force. 🤪🤣
Re. "That is one starting point, why did treatment not continue ?"
This was for a one-time occurrence of shingles. I had to join the army some months later and I had always dreaded that, fearing it would be too hard for me, or I would not be able to stand up against bullies. The shingles were only mild and I didn't suffer much.
Luckily, in "preselection" they saw I was a snowflake and put me in... medical service 😜 😂 I got to know some 10—20 doctors there, noticing most of them were batshit crazy! 😜 But they sure had funny stories. I got lucky and mostly had fun there.
It also taught me early that a nurse knows more than the doc One time one of the docs went, "Help!! What do I have to do here???" 🤣 Nurse fixed it.
That nurse also took my blood (it was mandatory). It's the last time I had a blood test. I don't think anything bad came out of that. It may remain my last blood test ever
The main other time I had that kind of anxiety was possibly some years later from an argument with a guy I worked for. This gave me spastic colon for a few days, which you mostly spend sitting on the toilet producing nothing 😬
If I have anxiety, it's often more from anger. Some suggested I might be HSP, but I don't recognize that much from it. I like to have peace and I hate when people around me are making noise that is totally avoidable or think they are the only ones living here. I don't mind the normal noises. It also taught me I once made such noise myself and I wish those people had told me. As a kid you don't realize the smallest noise can go right through the wall, let alone loud guitar playing 😁
I've actually had a good bunch of years with almost no anxiety, but I'm feeling some of it now because of anger and the (new) situations... I can then dream of ending it all, but OTOH I know it's temporary and I may just need some fuel or make a poop 😝
I love silly intelligent humor and I'm holding back constantly! 🤪
Re. "People believe I am too blunt or cutting. I am introverted with a whacky sense of humour."
Some 10 years ago, I discovered that in the Enneagram I'm very much Type 5 (The Researcher). It too says they like to confront people, pulling the rug from under them. Indeed, I am equally blunt but usually mean well 😌 I try to never start it unless it's clearly someone who deserves it (and there are many 😕).
Ok, one serious question. I'm still in a phase where I'm puzzled you find my mum's teenage anemia so important. AFAIK, they may have said, "Those nosebleeds are losing you too much blood, let's give you some support until we fixed that." IOW, a temporary thing (like for my shingles), but for you it is already a definite sign? Of what exactly? Anemia usually means it's "in your DNA" and kind of there to stay or pop up again?
P.S. I have a SW friend who kinda literally tries to buy all the figurines he can get his hands on! What deficiency is that?? 😵 I saw the original in cinema in 1977 and still have the 2LP, then mostly lost interest (not a Trekkie either, although I watched those as a kid).
I do not know what AFAIK nor IOW means. Nor need to. STOP.
Please fill in your biography. STOP.
As stated, I am not a haematologist. My brother in law is and him and my sister, a doctor, live in another country. So, they can see each other and go out for a meal, I fly to baby sit their children. Once, the oldest was sick whilst they were out, so, I bathed, dressed cuddled her and cleaned the carpet. Then coming home my flight was delayed due to severe weather at my city’s airport. High winds had overturned a car. I finally got home but at the airport, I just enjoyed myself having me time, doing a mathematical puzzle. My first degree was extremely based Maths based.
My sister had to take herself off FakeBook because patients would not leave her alone.
So, I will have a go at all the ones I know, leukaemia, malaria (infections of the blood is another group), sickle cell anaemia, microcytic anemia, macrocytic anaemia, thalassemia, congenital dyserythropoietic anemia which has 4 different subtypes. Myelophthisic anaemia or myelophthisis. Anemia of prematurity. Aplastic anaemias is another group, I only know one, Fanconi anaemia. Another nephew was suspected of this disease but turned out he had leukaemia. Anaemia of kidney failure. Haemolytic anaemia is another massive group of anaemia. Then there’s Pernicious Anaemia which is an autoimmune disease where vitamin B12 deficiency occurs due to lack of Intrinsic Factor and other signs and symptoms. Then vitamin B12 deficiency in isolation. Then Folate deficiency which could be as a consequence of a malabsorption illness, poor diet, famine or loads of other reasons. Then iron deficiency which could be due to any number of causes but is not generally genetic but I could be wrong; unlikely though because I am a mathematician. Your mother is a woman, it is that simple. We menstruate.
Getting to find out root cause is difficult and people just have to accept, We do not know and never will. We treat first, so the person does not become sicker and sicker before becoming severely disabled or permanently disabled. Most of the time we are too busy trying to do that to get to the reason of why a person gets nosebleeds.
A month ago, they found a new mammal in the rainforests but the environment will no longer be in existence within 10 years. We, as the human race did that. Today, I chatted to a guy and his dog, I commented on how amazing the dog was and how we are idiots. The guy replied, Yes, we are the only species to pay to live on the planet.
Septicaemia is a quick and a deadly blood disorder. Clinicians save people’s lives. They are exhausted working extremely long hours and we get upset when someone does not make it. We have 2 minutes peace to grieve before we have another situation to deal with.
Last week, I received an email from this sight saying I had been unkind and disrespectful in my private messages. The person had bombarded me with messages. I replied, explained medical terminology, a way forward, they needed 3 different specialties. So, that’s called signposting. They replied, their tone indicated that my advice was not good enough and they wanted this and this. They were making demands. So, I changed tactic, advised from a different perspective, told them to take care. Then muted the messages.
The problem is nobody likes to be ignored, me I do not care. If HU had read the messages they would have realised. The person reported me for practising safely. So, I emailed HealthUnlocked of this and the sight did not always have Evidence Based Medicine . Please read:-
http//en:?
{{I~have~not~read,^I have ^2 extremely busy^days a^head of^me}};
;
{{I~have~not~read,^I have ^2 extremely busy^days a^head of^me}};
NOT READ;
quit()
exit()
os.exit()
sys.exit()
I ignore people, machines, I am not interested any more, I have told them what to do very clearly. It is called Work/Life Balance. Social media is as social as a dead dodo. Worst place in the Milky Way.
Your post and your replies resonate with me in a deep and moving way. I can feel your love and worry for your mum and brother. You may not like what I am going to suggest but I am sharing from the perspective of personal experience.
The only person who “gets it” is you, your mum and brother are not you. You are willing to take action to get better and they need to do the same - but this is the tough bit - you can’t take responsibility for them not taking action - let it go. It’s painful I know - I have several family teeshirts having experienced this.
Lead by example and get yourself well. You can then share with them how you are doing it and offer the same care to them - but it’s just an offer, you can’t take responsibility if they don’t accept your offer.
The more you push and appear to try to take control of them, the more likely you will become isolated in a negatively frustrating way. But if you get well and make generous offers of help you will become a stronger advocate for the way to recovery … but even then it is their choice to follow you.
This doesn’t mean you stop caring for them, it just means you care in a way that has less of a negative impact on you. If you are able, I would share the letters to the GP with your mum although I suspect she may have no memory of the issues but you may have medical letters to back you up and remind her. This way you are less likely to be accused of going behind her back. If and when her real self emerges from what appears to be a B12D fog, you could think about discussing a lasting power of attorney.
I wish you well my friend and please look after yourself as your mum and brother need a strong leader and it’s in your best interests that you recognise the importance of knowing your limits and what you can do.
Thanks so much! 😊 I wish this was a real-life support group around the corner. I've never needed one until now, but happy to find some good people here 👍
I kinda gave up on my brother since the mid 80ies. It's closer to a hate relation, but we avoid each other well. OTOH, I want to do the right thing and I owe him one. I used to tease him too much when we were kids and he still has chips on his shoulder from that... Hey, there was no internet yet to distract me! 😉 It's kinda cool to discover some of it is not really him but the B12D, as I was expecting to be murdered at any point for a while... He does do some supps for himself, so I think he will gobble up B12 too.
Mum is more important to fight for, because she was robbed of her quality of life. "Everything I know" I owe to her, as she gave me all the time in the world (and not enough chores).
Mum attended a lecture on the Power of Attorney thing. It seems a little complicated and she may not fully trust me because of her state. I hope to resume my interest when she gets better treatment. A friend told me I should have it a year ago... My main fear is docs doing what they like with her. If I have power, she can still have that but I would first ask her 5 times if she's really sure and what the risks are.
I will indeed give her the letter or some simplified info to remind her of what is playing here.
The "Lead by example" is in one way inspiring, thanks, but sadly I'm not strong-willed, also from a lack of real-life support. From all my research and experience I'm also very biased and I kind of "would rather die than step into the medical system." OTOH, there are worse things and I do want to stay and care for mum till the end, play games, ... At least I may be able to win the game of Memory eventually!
"Or will some gatekeeper come out shouting, "BS! That's not mainstream science!""
That would probably be me 😁 but I am neither a gatekeeper or an admin and I would never use the word "mainstream" in relation to science because I think theres no such distinction. I do like to call BS when I see it though (and there is some posted here sometimes), especially if I think advice or claims are being made that are false/misleading or potentially harmful. If your non-mainstream info is simply a question or a personal anecdote about something that worked for you or is largely benign/harmless then I wouldn't be too concerned about posting it. If it is something otherwise then you may expect a robust (but hopefully polite) debate 😁
When I see you elsewhere simply putting people away by linking to things like rational wiki (wiki, QuackWatch, ...), it's already hard to remain polite 😉 I don't know how one could stoop any lower than that. Some of the best people are on those sites (often containing skewed facts and lies) (and yes, some of the worst too). If you are in your first years of research, you are forgiven, but do you really not know some of these are the real gatekeepers? It also seems you have never seen a critique on (modern) research, peer review, etc.? Most of it is by... scientists and insiders.
I'm afraid it's only normal in our world that more interesting research is put under the rug, but "the silliest stuff" becomes mainstream when it fits dark agendas better. It's why for plenty things the opposite is closer to the truth. I find that a huge distinction. If you're not hip to that, you will fall into many traps.
Here's a hint from one of the people mocked on QuackWatch...
"[…] in 1964 H. Doyle Taylor organized a group of governmental and nongovernmental organizations that worked behind the scenes to destroy alternative medicine. Known as the Coordinating Conference on Health Information (CCHI), the group paralleled what the AMA’s Committee on Quackery was doing. The only difference between these two groups was that the Committee on Quackery was generally overt, while the CCHI was covert, operating entirely behind the scenes, behind closed doors. Of particular interest are the members of this covert operation: the American Medical Association, the American Cancer Society, the American Pharmaceutical Association, the Arthritis Foundation, the Council of Better Business Bureaus, the National Health Council, the Food and Drug Administration, the Federal Trade Commission, the U.S. Postal Service, and the Office of Consumer Affairs."
I love certain historians and contrarians, people who were awake early and took note of all the manipulations 👍 They will tell you a lot was hidden since the 60ies (or even earlier). They might say, "Don't read anything after 1929," etc. (depends on the subject). Now I can't even reveal you such person, because you'll simply go to rationalwiki and leave yourself chanceless to great information...
I hope for you that you're not going to do this with any new name. I recommend to critique their work yourself, which for some can take a few years to really "get." Then you can open such page to check if maybe there are two truths in them that you were not yet aware of. Just the language alone from some who call themselves "rational" wiki... 😅 Feels more like some butthurt clowns. You should especially not open such pages when it fits your argument (cherry picking). It's "not done," IMHO.
We have a great admin team who are quick and fair. They will address anything that’s against the rules promptly. As long as you are not rude, or name medics etc usually any topic related to B12D and PA is acceptable.
If in doubt why not ask an admin directly? Gambit62, foggyme and taka. There is a contact button below for them.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I did develop grey hair fairly early (as did my mum). As a kid or teen, I was also mocked sometimes for being kind of pale, but still "within limits" — not a dead man walking 😜 In 1988 I received 5 Vit B shots for an anxiety related thing that wasn't too bad.
Newbie with some hope and a couple of questions!
Could it not be PA/B12 deficiency?
New to PA and have lots of questions 
PA with no antibodies?
What next/ question for those with AIAG/ PA 
