Has anyone seen the recent Panorama programme on Lecanumab, the latest drug for Alzheimer's?
The presenter reveals how the drug causes major side effects and brain enlargement. It is considered a step forward for Alzheimer's treatment but sadly only effective when caught at an early stage.
To highlight - I had a meeting with one of the Doctors featured in the programme to talk about my undiagnosed B12 at NHNN / UCLH.
It will go down as one of the worst experiences of my life...and they used the 'its a placebo' line with me before accusing me of injecting 'stuff I found on the internet'.
These people do not care about our health. They care about making profits from drugs which, in this case, are faulty.
Keep injecting and keep having an open mind about why Doctors aren't getting trained in nutrition.
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Pickle500
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I have not seen the Panorama program. Yes, I know it is very similar to you lots of other industries such as must have the latest designer jeans, latest all singing, dancing mobile phone.
We have found a new cure for this, we designed a new robot to pick our nose. Many years ago, I attended a conference. It included a case of a very poorly baby. The parents had come to terms with the inevitable. Obviously, heart broken. Two consultants were adamant that they were going to do everything they could. Eventually, the parents begged, Please let our daughter die with dignity. Just peacefully. No more.
I hung my head in shame, tears in my eyes as I heard how those consultants had resuscitated a newborn 40 times. I knew every time would cause more damage to this little precious bundle. What exactly were the doctors motivates ? Had they spoken to the parents properly - NO.
The Panorama journalist does challenge the neurologist on the huge cost to the NHS of prescribing anti-amyloid drugs like Lecanumab. But the defence was 'it's a step in the right direction to help people live longer'.
Even though it can cause swelling and blood in the brain?
Yet, how many NHS doctors check B12 or IFAB in dementia patients?
I watched it and took notes. First thing, it is a trial, second I noticed the environment - yep that is a private clinic. Third googled neurologist. Has their own private business. It is still in trial stage. The NHS do not even have the blood test to check for the raised amyloid plaques. Could they afford the monthly PET scans that are required with administration of the drug ?
One of the cases pointed out a 7 month wait in the NHS just to be seen for memory clinic. Patients are not necessarily diagnosed. It can take years. Like they said ,It requires early diagnosis.
The other neurologist said something along the lines of, This is the first time I have ever given a drug that I know works. It has been trialled on 853 people. You have said about the side effects of brain swelling and I noted that 3 fatalities.
With Research and drug trials, they are between 10 to 20 years ahead of what can actually materialise within the NHS. Can the NHS afford the drug, the blood tests, all the scans ? It won’t even pay its staff properly.
Exactly, how many elderly people are stuck in Care Homes and on Elderly Mentally Infirmed wards because of PA/B12D ? Have diagnosis of Parkinson’s Disease, Alzheimer’s Disease or Dementia ? I comment and post on it often.
It is the reason, I told my GP to keep my 3 monthly appointment. I want the money to go on a District Nurse visiting an elderly person at home. They already know the misdiagnoses.
This paper, if you can access it, suggests 'No clinically meaningful effect from Donanemab with 30% experiencing brain bleeding or swelling, with two trial deaths under investigation'.
But APPARENTLY one can overdose on B12? Apparently 'you can have too much B12' according to medics.
And APPARENTLY the neurologist in charge Dr Mummery suggested to me that B12 injections were 'placebo'.
Yes, medical students are taught lots of pharmacology. Then when in industry because Health Care is an industry. So, is the Pharmaceutical Industry. Then have a look at their Revenue, the Financial Times will show the Stocks and Shares of any drug company.
Years ago, working on a General ward, the Pharmaceutical Rep would often invite me along to dinners. They wine, dine, give presentations, they are Sales People. People are often quite horrified when I tell the truth, CCG’s are businesses, they have targets, profits, budgets, board of executives. Do doctors get incentives for promoting, prescribing a particular drug. It truly is a numbers game.
It’s quite easy to say to an idiot, Who wrote the article on B12 being a placebo ? What journal and year ?
I saw it advertised. Couldnt face watching. I am as cross with our media as I am with the doctors for promoting this stuff, new bloody wonder drugs when people should be taking Vitmain D and B12.
My gran had thyroid problems which in her era she got NDT. . . . Her GP checked her over now and again, temp etc and symptoms and then along came the magical levothyroxine and the associated tests . . . . . Complete bollocks that was.. . . . . . That same GP treated her with B12 I was to learn later but Gran moved, the GP retired and quickly so did her treatments and she existed not knowing anyone for years. . . . . . She once ask who is that man in the corner to which one of us replied, Thats your husband Jack . . . . She rolled her eye's and said "Heth thats not the nice young man I married" . . . . I would have broke your heart and little did I know that same GP had started my dad on B12 once per month and he too done well until he too had his dose reduced to the point he didnt even remember to go get it. . . . We remember him well couldnt wait the beginning of everry month until he got hs Jab as he called it. . . . . . I hadnt not a clue what he was getting but it was good stuff he said. . . . . He was later diagnosed with Alzheimer's and only then my wife learned he had been missing B12 injections for years. . . . They then gave him B12 injections until he passed away .. . . . None of us could see those jabs doing him one bit of good . . . . . I also have a story about a GP starting into my daughter and she let him have have his say and then turned on him telling he she outqualified him hands down on nutrition to which had the nerve to reply . . . I dont know about that . . . . . Some GP's, though not all are Gods it seems. . . . . .
It's worth seeing. It doesn't promote the drugs - it's a balanced view since the drugs will cost the NHS huge amounts.
It was the cavalier attitude of the neurologist I saw who spent most of the documentary telling people how excited they were to doll out new drugs to patients like they were lab rats. Since they never got to do that before. Like some kind of spoilt child.
The drugs will cost the NHS a fortune. And in many cases lead to severe side effects.
Usually the NHS costs are not a high as the US. . . . . This will be interesting . . . . . The EU is expected to announce its use later this year and what the costs might be. . . . The EU always has had good leverage for dealing with big pharma but how will the UK fair now is interesting. . . . . .
For me this is an absolute cash-in from this neurologist and the companies behind it.
5 months of extra life with dementia or maybe death or brain swelling?
And the NHS Doctors have to treat in time?
But anyone with B12 deficiency is treated less than an household dog and not given regular injections?
We're being 'mugged off' as the proletariat would say. We are all very silly to believe this nonsense. Just the same way we allowed certain Ladies in the House of Lords to sell us the NHS PPI.
As Edwin Collins once said, it's time to 'rip it up and start again'.
I;d agree with you. . . . . . . I dont know why we cant be taught to SI and allowed to buy B12 locally even if not prescribed. . . . . . But there are so many lobbiests inn that big house holding that back at every turn in case a few people might get better and not need big pharma drugs. . . . . . My GP here done a quick calc and told me how much I'd be saving. . . . . . Just need my chest diagnosed and sorted now. . . . . . Fortunatley I no longer reside in NHS land. . . . . . . When I did live there I got nothing but anti depressants etc and no diagnosis despite my Dad having had jabs since before wifey and I were married... .. . . I firmly believe that those of us who SI are less likely to suffer from dementia etc. . . . . . Before I got diagnosed and treated I was beginning to think I was getting same as my head would complete nothing for me. . . . .
Our eldest done her dietetics at Queen Margaret Edinburgh and while that certainly is all about nutrition for all those 4 years it was generally looked upon that with the good modern diet and foods being fortified vitamin deficiencies should not be a problem . . . . . She says doctors will learn even less and my sons woman is such and that her time on vitamins could be counted in a hours not days. . . . . . .The daughter did learn a bit though. . . . . The amount of B12 we need was around 10ug per day which suits the 1000ug every 3 months idea but she also read in other text that B12 does not remain in the body for weeks let alone months . . . . She thinks she read 72 hours. . . . . . There was little mention of PA and no mention of B12D. . . . .
I suppose there's an intrinsic link to the gastrointestinal system, with B12.
So I wonder if the studies focus on the measures of various vitamins and minerals and avoid any knowledge of the absorption process for B12, e.g. saliva, stomach, intrinsic factor etc.
I would be curious to know if your eldest received any learning on that process and the links to the small intestine and stomach acid levels with vitamin absorption.
I suspect that's where the missing link lies - dietetics to gastroenterology. A quick Google search refers to "Gastroenterology Dietitians" but I believe these a specialised dieticians tasked with giving nutritional advice and planning to recover from a diagnosed gastrointestinal problem.
Perhaps if everyone with B12 deficiency was referred to a gastroenterologist for diagnosis and testing it would make sense. But it rarely happens and falls to neurologists to help since the nervous system is most often affected.
I would be of the notion that neither Haematology nor Neurology really suit this problem and it seems most have little interest either. . . . . . My daughter would tell you that vitamins were as I wrote before covered by good modern diet and foods being fortified. . . . . . Job done, next subject matter. . . . . As a side note she walked away from Dietetics some time ago. . . . . . Reason was that almost without fail every patient she seen didnt need a dietician.. She said they near all needed a Therapist rather than her. . . . In other words there was a cause for their weight problems, . . . . she would say that seeing someone with a problem caused by surgery etc was like a breath of fresh air but those events were rare. . . . . . .
As to research. . . . . . I have found some mostly small studies on B12 absorption and how long B12 stays in the system but small and scarce they are
Once science had found Cobalamin and how to make it as in Cyanocobalamin they had achieved their goal. . . . . They had a method to stop deaths caused by Pernicious Anemia . . . . . A horrible death. . . . . . They achieved their goal sold their product, job done. . . . . There doesnt seem to have been any money seriously spent on B12 or related problems since. . . . . .
Somehow in the 1960s hydroxo was made by a reaction involving if I remember both Methy and or Cyno plus white light amongst other things. .. . . Right out of any field or understand of mine there . . . . .
Hydroxo is of great benefit to fire victims because cyanide binds tightly and quickly to Hydroxocobalamin and therefore is removed from the bloodstream quickly and hopefully without harm. . . . . . Cyanocobalamin is of no value in that field. . . . There is many times more money being spent on that use than in any other is seems. . . . . The current kits use 250ml liquid with a whole 5g given by IV over I think a 20 minute period. . . . . . That is as we'd say here "some dose". . . . I do not know why every country has to experiment with it as it has been in use for decades some places and is accepted practice for many. . . . .
It just seemed such a shocking response to me, that a neurologist leading in dementia could deny the power of injections. I think I was being gaslit and misdiagnosed. Even still, just saying the word 'placebo' just strikes me of some sort of devious cover up.
The Panorama episode alludes to the fact that the NHS will have to pay out for this expensive drug. That's if anyone with dementia is caught in time.
Yet, when I experienced severe confusion and dementia symptoms that was something else. It was 'all in my head'.
Sorry to read Pickle500. If a Clinician cannot remember that severe confusion and dementia symptoms can be Delirium and assess you for that then they are incompetent.
P - Pain
I - Infection
N - Nutrition actually NUTRITION
C - Constipation
H - Hydration
M - Medication
E - Environment
I am dreadfully sorry about the attitude of some doctors towards their patients. Many have had a long journey to diagnosis. I have a diary of dates, times and rude words.
I can live with someone in authority being obnoxious.
What I can't live with is a world that believes that authority because they've come up with their 'best effort' to treat Alzheimer's through two drugs that may extend life for another 5 months.
I've lived with a widower who had early onset dementia and it was an absolutely appalling existence for him and a grim ending. Another 5 months of that? And you have at least 20% chance of dying?
But B12 injections are PLACEBO and YOU CAN OVERDOSE?
We have to stop believing people who do not care about our lives. They care only about their own lives.
Apparently I had 'Functional Neurological Disorder' and waited 18 months only to be offered antidepressents.
I would only have taken them to alleviate the depression of going through such a frankly embarassing and ridiculous fiasco.
I am so very sorry to read about your experience. It sounds awful and I agree with you about a 5 month extension.
Yes, I too had a FND diagnosis. The biggest problem, I believe is managers have managers and they have managers too. They just make all this extra work which makes no sense. See what’s happening in hospitals, GP Surgeries, Clinics and just use a bit of common sense.
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Finally the Doctors and Haematologist are listening
Thinking of giving injections a go, help!!!!
19 years old, wanting to self inject B12??? - long post!
Importance of very good B12 levels to prevent atrophy of Alzheimer's related brain regions
What now, totally lost and scared 
