I sincerely apologise to those non-U.K. based, however those abroad, I would be interested to know of how your Health Care systems works.
P.A./AMAG/B12D can cause neuropsychiatric symptoms and on a person’s health journey, a person can be misdiagnosed with a Mental Health illness or disorder. This can include :-
1. Functional Neurological Disease,
2. Hypochondria otherwise as Factitious Disorder
3. Medically Unexplained Symptoms
4. Schizophrenia - this is commonly diagnosed with those who have the MTHFR gene because of the way folate is metabolised.
5. Bipolar.
It has come to my attention that even with firm diagnoses of physical health diseases or conditions, if a patient has been in the MH system, they are NOT allowed to decline further input. This is actually breaching the Human Rights Act (1998) and the Equality Act (2010). Psychiatrists and Mental Health workers demand that patients engage with them.
They also ignore a patients’ physical disabilities. They do NOT listen to patients. Their Database is totally separate from the Medical notes so they have NO idea that a person is NOT fabricating NOR feigning their symptoms. They need verbal consent from the patient to access the notes. Well, if a person is about to faint or is hypoglycaemic that is going to be very difficult. There is a huge power struggle between patients and psychiatrists. With the latter wrongly believing that they are above the law. They harass patients informing them they must attend appointments even when people are so poorly with PA/B12D that they can barely walk, using zimmer frames and wheelchairs.
Kamran Abbasi, the editor-in-chief of the medical journal British Medical Journal and Allen Frances chair of the DSM-IV task force write extensively on the harms of over-diagnosis of Mental Health disorders. The psychiatric system is like NO other. Psychiatrists apply for warrants to arrest people for P.A/AMAG/B12 so involve the judicial system. Who in turn involve the Police force. Medically unqualified Social Workers document that there is nothing physically wrong with the patient when they have failed to read the Medical notes, blood test results and documentation from Medical specialists.
Then when it transpires that the patient has a physical disease or illness such as Hashimoto’s Encephalopathy or P.A. which can cause inflammation of the brain, psychiatrists and MH workers try to change notes, make excuses and backtrack. They also lie to their patients and that they must still attend appointments.
So, if you are wonder why you cannot get more frequent injections, it is because money is being misspent within the NHS. Please note that a Consultant psychiatrist’s salary is up to £126,000.00. Physically sick patients who are stuck in psychiatric hospitals, a 6 week stay costs approximately £19,000.00. Unnecessary appointments are being made, unnecessary treatments are prescribed and involvement with Council run initiatives are forced. Apparently, physically sick patients must go to Day Centres to be involved in jewellery making. The person is actually at risk of fall because of poor mobility and they have a carer who helps them wash, dress and cook.
Unfortunately, Record Keeping is a very low priority. The Data is practically non-auditable. It has irrelevant data and some is derogatory. It is sloppy and haphazard throughout. Medical notes are Legal Records. Theirs will not stand up in a Court of Law.
I cannot save everyone but I do want you to know of the corruption that occurs within the NHS. Plus, the deceptive and bullying tactics that occurs in the MH system.
To me, Data Fraud is Data Fraud. I just wish to make you aware of the NHS Counter Fraud Authority. It states that the NHS is vulnerable to £1.264 billion a year.
Several NHS staff have misused public money. Two cases are :-
1. One doctor having a lavish lifestyle with cars and holidays.
2. One employee fabricated numerous staff, these staff would get paid and that one person pocketed the money.
Apologies for the delay in replying, I have taken myself off to warmer climates and sort of on holidays.
Those bullet points on screen is a marvellous idea. I believe everyone should carry a Medical Passport - bullet points of your CORRECT data in. You sign each entry to say it is accurate. (For those who are too poorly to hold a pen other options available).
Sending my best from a country where I could waltz into a pharmacy buy shower gel and our Best FriendForever over the counter. No questions asked.
An awful lot is also wasted on mistakes and inefficiencies. Plus, as has been said, different departments don't talk to each other, which leads to more money wasted. My daughter goes to a specialist hospital in a neighbouring county. Doctors in the two areas don't talk to each other, resulting in duplicated expensive tests costing thousands of pounds every year, not to mention the stress caused. These problems are country wide, if they were addressed, just think how much money and stress they would save.
Exactly. There is no strategic or organisational planning. I watched a marvellous initiative in Hull. They have set up a Clinic where they have a team of specialists from different Departments. One patient with complex needs had the equivalent of 20 separate appointments all undertaken under 1 roof. It took approximately 2 hours, all investigations and tests performed with all the Doctors they needed. Less stressful for patients, families and extremely cost effective.
I believe it is in France, you see a GP or Primary Care Physician and then depending on your signs and symptoms, you are sent down a long corridor. In Room 1 is Ophthalmology, Room 2 Cardiology, Room 3 Neurology, Room 4, Rheumatology etc.
The Doctors and Nurses are in the vicinity so they knock each others doors and talk to discuss patients as well. So, Care is Coordinated.
I’m afraid that our NHS has turned into a big business enterprise with all the attendant negative consequences.
You have put the case extraordinarily well Narwhal10. Thank you . I feel utterly helpless and outraged at what has happened .
A huge disservice to NHS workers and patients .
There are of course always exceptions, for which we are thankful . But don’t dare to have Pernicious Anaemia whatever you do ! If you are so unlucky , just join the Pernicious Anaemia Society , and get advice and help.
Exactly wedgewood. You do such a wonderful job on here by signposting and private messaging people. It does not go unnoticed.
Many moons ago, I was a Software Engineer, we spend ages in the Planning stage. My latest venture has been 4 years and is concerned with our disease. I Press buttons on a computer. People often say That’s News to me.
Yes, I have a meme of Computer says NO. I am sure you know that you Do not need an IT system to tell you that a baby is hungry or needs a nappy change.
I feel the same thing happens in Canada. Over a decade ago I was only given weekly shots cause more b12 was “too much”. I suffer from most symptoms when low which sucks. I was losing my ability to walk and was put on antidepressants. Fast forward to 2020 after hitting my head I got really low again and realized I was never on the right dose and could have energy and function. I felt out of my mind and again put on antidepressants. This past Oct had to switch to daily and realized it was the fact that I couldn’t breathe, not getting oxygen and it was never anxiety disorder. Even some days I inject twice and part of that may be because I don’t know what the healing feels like when I’m not on Wellbutrin or citalopram which I now know made me not feel the neuropathy. The ignorance over b12 blows my mind.
Yes, thankfully my legs improved years ago on the bad schedule but it took many months. I take many supplements and saw a naturopath. Also had oral thrush (common with b12 def) really bad for many months and did a candida cleanse which was hard but really helped. My foot would always burn though throughout the years. And my balance has never been the same but I’ve also had two concussions in my life.
Yes, I had about 32 symptoms with b12 deficiency found. And I would say about 80-85 % alleviated during or close to loading doses, four years ago. But my legs/gait issues were not one of them. Well besides foot drop, that was a regular occurrence before supplementation & alleviated afterwards.
I have no atrophy that is why it seems so strange to me.
Thank you, I obviously crave others' success with their legs.
Yeah, my scans were all fine too. Odd how such a crippling disease doesn’t show up on scans. One thing I learnt with my 2020 concussion is that eye exercises can heal the brain. At one point we got my balance problems that were over a decade old to a good point. Best it had been in years. But it’s pretty common to bump into things with post concussion so I kinda ruined it. lol. B12 damages the brain so much. I remember being in such a fog and slurring my words too. If you ever want to try something or get an opinion I’ll put a link below of what Ive been doing. It’s also helping my dystonia which started same time as b12 issues and doesn’t show up on any mri. It’s Chiropractor Neurology.
Thank you so much Swift20. Will definitely look into it, and try to save up. Fascinating.
(By the way, I was slurring words & having a word come out of my mouth, when I was thinking of another. It all disappeared not long after loading doses. It is insane what b12 deficiency can do & so many doctors, including specialists, have no clue.)
Anytime! Also if you have extended health care benefits you can claim the max amount under Chiro.
Yeah, the speech part was the worst. I felt like I was drunk with my slurring. Specialists need to learn that our b12 serum level is useless and won’t tell them how we feel.
Interesting. Nystatin was what I took too but didn’t help. But I assumed candida was in my gut too so it would make sense as to why an oral tablet worked. Good to know!
Thanks! I’ve come a long way but still struggling with the right dose/frequency.
To be honest a lot of Canadians thought the US had great doctors because they pay for it. I see that’s not the case. Canada is lacking in many areas especially if they don’t understand the disease. I lived with Cervical/Jaw Dystonia for over ten years and neurologists were no help. It took getting a concussion in 2020 to finally get diagnosed…within ten minutes by a movement disorder neurologist who is amazing! I am lucky though that my doctor lets me inject frequently but is still worried for me. Doctors just don’t understand PA.
So right, I have just been diagnosed as having FND by a neurologist who didn't do any mri/scan to rule out subacute degeneration of spinal cord even when I told her I had PA, and no nerve responce in my hip. "don't know anything about PA" she said so used the umbrella term FND to cover it. . She wrote to my new GP and advised I was sent for CBT, cognitive behavious therapy? I don't have schitzophrenia, OCD, anorexia etc, anxiety yes after her letter. Thankfully the GP agreed with me when I refused to go and said I wasn't happy with her decision. She said that we would start again in the new year with imaging and go from there. Help at last. Thank you for making me feel sane. If not for this forum where would we get help.
schizophrenia, OCD, anorexia have no scientific basis. There are NO tests or investigations to prove them.
Two highly respected and qualified doctors write extensively on the dangers and over diagnoses of Mental Health conditions.
As a Computer Scientist, to me there is ONLY one answer. 0 or 1 which is TRUE or FALSE. So, I use Mathematics to Audit Medical notes. False, False, Pernicious Anaemia/B12D diagnosed at 9.27 on 17.12.18.
At least you have a healthcare system. In the US you're on your own. If you don't have good health insurance with your employer you often have to do without. I'm one of the lucky ones who has really good insurance so I don't have many complaints.
Health care is atrocious, we have a two-tier system, poor people (and the cut off level is less than the dole) get a medical card which entitles you to free GP/hospital treatment/tests, and used to be free prescriptions. People on social welfare do get a medical card, as does anyone over 70 years old.
Everyone else has to pay, or have medical insurance.
I've had to 'fight' every time I go to the doctor to get anything, the typical response to a female patient being "it's all in your head". Aside from my mother, who got everything thrown at her for the slightest [mostly faked] symptoms.
It's a joke, and trying to sue for medical negligence isn't an option.
The NHS consumes over £160 thousand million some 9% of GDP. It employes 1.24 million people. It is simply too big to be managed - even by a genius- and clearly the civil service nor the latest politician appointed "Health Minister " are able to manage such a beast.
The generally approved solution is to spend more money on it, that is to make it bigger! I know it's heretical and difficult but maybe there are other solutions? And no, I do not want to privatise health care.
For example free hospitals. So imagine a group of doctors want to set up.... I know a b12 centre of excellence. So they apply to the Dept of health for funding in return for treating so many patients etc.. Then the unit sets itself up as a non profit and is self managing. They could innovate treatments, they could revolutionise like .... teach self injection and appointments by email. What a crazy thought! If it worked well they could set up a second unit or expand to treat.... something related like hypothyroidism. And here's the kicker, if they failed the unit could be shut down and the money spent elsewhere.
Sadly, not-for-profit organisations end up spending much of their time applying for funding, match-funding or proving what they have spent their money on or justifying why the project should continue and how it intends to develop beyond the need for any financial help in the future.
This means that the most important person in the organisation becomes the person who controls the finances and the one who writes the funding applications, not the public-facing staff trying to make a difference to their community.
Most of the community-based projects started with goodwill in the 80's have long-since disappeared. Not through failing as much as not having the funds to grow, and committees wanting more, bigger and better.
The fraud and waste within the NHS is certainly frustrating, but minuscule compared to the USA. Profit at all costs is the mantra here. No care for those without adequate insurance. I used to manage over 40 radiology practice locations across the country and recruiting radiologists was frustrating. Fresh from school I was authorized to offer a starting salary of $330,000/yr with profit sharing and 90 days vacation every year, and this was over ten years ago! Specialists making over $1,000,000 is not uncommon. The CEO's of insurance companies are paid multi-million dollar contracts, all based on profitability and that profitability comes from denying care to patients. Sorry for the rant, but I would love to have the issues of UK and Canada, or most any other developed nation in the world rather than what we have here.
The waste in our system, here in Canada, is frustrating. Especially with b12 deficiency - the doctors are simply not educated and refuse to drop their ego and realize they are not. This leads to many separate investigations, which are wasteful. I wish we could have a specialist that views the body as a whole. We do, but in Ontario it is outside of the OHIP system. My own GP at the time had zero desire to hear all about my symptoms, many of years on end, going poof with shots. Excellent information for patients after me and no interest. She only wanted to hear about fatigue.
I had a naturopathic doctor send her my symptoms 'cured' and therefore it had to go in my file.
As far as mental health issues, I *think* people have the ability to leave or choose any treatment plan. I would think people only lose that ability with very serious issues, often coinciding with the judicial system. Our system suffers from the lack of available mental health professionals more than anything else. Someone could need care and wait for years, which is insane. I don't believe there is anything like you are describing within the NHS, in Canada.
But of course there are doctors that denote mental health issues when they can't find the answer through testing.
I wish they would accept that medicine in many areas is actually in its infancy.
I had sepsis twice. I found a study that actually states Muscle.quality without atrophy after sepsis. I almost fainted finding it after years of suffering with my legs. My GP's response "Well it is only mice" like it had zero validity. I said, Did you read the part that there has been zero successful research before this because they kept killing the mice with sepsis? 🙄
Poor mice.
So now they are keeping them all alive and it has zero merit?
So many frustrations.
There were a few wasteful practices in elder/palliative care but I must say that our system, at the time, was relatively productive for keeping loved ones at home in Ontario, and having support. Both my parents were able to do this with our care & time and the province's support. One with dementia, and one with glioblastoma. But then again not every family has someone to take on that role. But it was an area that I thought :not a bad job OHIP' (health care in Ontario, Canada).
I'm in the US and PA is an orphan here also. Providers don't see it very often, don't know how to treat it, except with cyanocobalamin which is inferior and sometimes ineffective. But we all have the Internet and access to the wealth of knowledge residing there. Research has shown that often oral treatment can be as effective as injections. I have been using an oral hydroxocobalamin for about 3 months (2mg /day) due to a national shortage of the injectables. Surprisingly, I am doing well. Amazon to the rescue!! Sometimes we need to take matters into our own hands and get what we need outside of the healthcare system. Best of luck to all of you, be your own advocate.
How wonderful & interesting Lin. I have tried pills to no avail but never hydroxycobalamin (shots I have tried all three - and do not do well with methylcobalamin in shots or pills).
It is difficult to get hydroxycobalamin pills here, even on Amazon but I have seen hydroxycobalamin drops/liquid. Our resources for pills in Canada are filled with cyanocobalamin & methylcobalamin. Of all three shots the hydroxycobalamin was the slowest to kick in, often on day two or three, but once it did it has the greatest strength for me. But unfortunately it had unwanted side effects in comparison to the very reasonably priced cyanocobalamin (buy a ten use vial here at a pharmacy for $5)
Note to those reading - some feel no difference between the different forms of b12. I felt marked differences.
Might give it a go Lin. All the best to you & thank you so much for your post.
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Further frustrations with NHS
NHS Scotland guidelines?
A victory with my NHS GP! 🥳
Does the NHS measure holotranscobalamin?
