Yesterday my wife and I watched the Sally Pacholok video which tells how she battered at the portals of the medical profession to get Vitamin B12 deficiency more routinely tested and diagnosed.
I was amazed at how many of the "patients" she "discovered" whose symptoms were ignored by doctors "could have been me" back in the 1960s and 70s before I was found to have Pernicious Anaemia - which is a form of B12 deficiency.
Apart from having my every four weeks injections of cyanocobamalin B12 I lived in complete ignorance of the disease as none of the nurses who gave the injections ever asked how I was coping nor did my doctors whenever I saw them for other reasons, I didn't know anyone else with P.A. so I had no-one to talk to or ask any questions I had.
In about 2010 when I began to feel a return of some neurological symptoms in the run up to my next scheduled injection my doctor refused to increase the B12 injections saying it was all in my mind.... I then joined the Pernicious Anaemia Society and ask "Am I the only person in the world who get these symptoms......." I was amazed at the response.
No! I was not alone, There are thousands of others who also struggle against the "one size fits all" syndrome employed by doctors.
The video is well worth a watch - as you never know - you too may be B12 Deficient - for one or other of the many causes including Vegetarian/Vegan diet, medications or other autoimmune diseases etc. - like it is estimated that 40% of Americans are - and they don't even know it....
The photo was taken shortly after gastric surgery to remove two thirds of my stomach after a perforated peptic ulcer on 3rd May 1959 the day after the F.A. Cup Final Nottingham Forest v Luton - 2:1. I was livid at not being allowed to watch the match at the end of the ward in case I got too excited
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clivealive
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Well Clive, we all know that doctors, even specialists, simply dismiss B12 deficiency... sadly nothing has changed , or very little since you were diagnosed. It's always a battle to get B12... There are a bunch of incompetent and uncaring people. We should not have to struggle so much to get support and much needed treatment. Thanks for link. Keep well.
And removal of parts of the intestine and the stomach, I think, reduces absorption of B12, which is why people who have had their guts stapled etc need to be on replacement and to have their levels done. I really wonder, however, how many of those people are left ignorant of this need and slowly become demented and crippled. I watch the Sally Pacholok video with my best friend, who has some awareness of my problems but finds them all a bit hard to imagine. I saw her own B12 levels, which were grazing the lower limits and I gave her a bottle of sub-lingual B12, but she ran out and stopped taking them. After watching the film she asked me for a copy of Pacholok's book, which I lent her, and toddled off to bone up on it. I thought she might be bored of find the thing overdramatic, but she wasn't and didn't. Also, I'm afraid that years of nursing and then having a family with thyroid and B12 issues that were not diagnosed, even when the doctors had the levels, and then the thyroid treated without effect (because of inability to convert t4 to t3) I have come to the sad conclusion that big pharma has got the medical schools by the throat, that their students are selected for their obedience, and that we are suffering the effects of a medical system that is third world in many ways, whilst big pharma is laughing all the way to the bank and the docs are getting ever more resentful because nothing seems to work on their ungrateful patients. (I am in Australia but the UK seems even worse.)
I watched this last week with the good lady too! (Movie not the match) and constanly have Drs tell me symptoms of b12 are in mind, dont exist, dangerous to have more than 8 weekly ... one nurse lectured me on how it wouldnt make me big as shed heard youtubers using it for wieght control or working out, and to do sublinguals...even when in a wheelchair with chest/heart problems etc (found some docs that are listening abroad now but wish there were more sallys! Definitley identified with a few patients in the video, so seemingly same situation years on sadly, shouldnt be this hard for drs and nurses to care a bit more about this)
Either way cliveAlive dont think i looked as sharp after surgeries.... not being allowed to watch the game too is a kick in the teeth! Hope you were a NF fan and if not i hope there was waffles + maple sryup and icecream after !
No Fudgemanjim I was a 17 year old "kid" wanting the "underdogs" Luton to win but all I could do was listen to the cheers or moans from the "sitting room" crowd at the other end of the ward whilst sucking the unending hourly supply of "Horlicks" tablets which each took forty minutes to dissolve.
The ulcer had first "burst" the previous Tuesday whilst at work (as an apprentice electrician) in the very centre of Birmingham and the hospital (thinking I'd eaten beetroot for breakfast) simply sent me back home with a letter for my doctor.
I continue to bleed (from both ends) until on Thursday I was rushed across to the other side of the city and put into a medical ward and put on drips - and Horlicks... I was unable to eat or drink anything
Sunday afternoon visiting time with my Dad and sister in attendance I lost a kidney bowl full of blood, the surgeon was called in and I was operated on that afternoon.
The only advice I was given by the surgeon was that I had to give up my apprenticeship and get a "sedentary" job.
It was 13 years between the surgery and P.A. diagnosis via a second "Schilling's Test" in 1972 by which time I was a "walking Zombie". However I may have gained a "respite" in 1968 when I had the first (inconclusive) "Schilling's Test" during which I had a huge injection of B12 as well as drinking a dose of radioactive B12.
I have never known what caused my ulcer, suffice to say I left home within a couple of months and never went back.
I ignored the surgeon's advice, qualified and only then, when my health and energy levels declined did I seek "sedentary" employment ending up being retrained (by the Government) in accountancy and becoming registered disabled (by reason of the surgery) in 1970.
I struggled on in my new career a further two years until my doctor sent me for a second (unheard of) "Schilling's Test" which proved positive for P.A.
I was given two options - eating raw liver 3 times a day or B12 injections. I chose the injections.
My (at the time) fianceé "commissioned" that photograph at a local studio - it must have been"touched up" or "digitally remastered" or something. and "Boy you wanna see me now".
I'm very carefully folding my arms across my stomach scar which was still pretty sore.
Hi clivealive what a dreadful time you have had ..thank you for the video link I am going to watch it when I get offline your post reminded me about other autoimmune conditions ..I have hypothyroidism.. on 100mcgs daily and I have also had what was called a gastric ulcer .. diagnosed in the 1970, with a baruim meal test (yuck)! but was fould to be healed but had left a sizeable scar.. I wish you well as you recuperate ☺
Were your neurological issues sorted in that time as every other day injecting protocol wasn’t st that fime? If u can tell how often did u inject initially to keep neurological symptoms away
It's hard to remember back over 47 years ago but I think I had alternate day injections for ten days and then one every four weeks for many many years until about three years back, noticing a return of some neuropathy in the run up to my next injection I persuaded my doctor to give me them every three week.
Thankyou for the film link I just watched it it's very informative I think every doctor should be made to watch it. Years ago my doctor rang me saying I couldn't possibly have PA as I didn't have macrocytosis. I got tested abroad for IF which was positive but she insisted on doing her own test (pointless!) Negative. As far as she is concerned I don't have it. On a mission to prove me wrong it feels like!
You have had such a journey and a hard one. I wish you well. Great picture
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and constanly have Drs tell me symptoms of b12 are in mind, dont exist, dangerous to have more than 8 weekly ... one nurse lectured me on how it wouldnt make me big as shed heard youtubers using it for wieght control or working out, and to do sublinguals...even when in a wheelchair with chest/heart problems etc (found some docs that are listening abroad now but wish there were more sallys! Definitley identified with a few patients in the video, so seemingly same situation years on sadly, shouldnt be this hard for drs and nurses to care a bit more about this) 
Various B12D/PA resources 
Unsure I’m getting the right treatment for B12 deficiency 
FIRST HYDROXOCOBALAMIN INJECTION - feel even worse
Vitamin b12 injections and folic acid tabs?
