I am delighted to announce our second event and Sally Pacholok will be with us again!
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Tag Archives: bipolar
Many B12 deficient patients would prefer ‘a dogs life’ when it comes to treatment
Vets have a greater knowledge of B12 deficiency than the average GP.
Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.
He would not be given antidepressants for B12 deficiency induced depression.
He wouldn’t be considered to be a lazy hypochondriac.
He would have all of his symptoms taken into account and his improvement would be monitored.
He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?
I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?
please could you let me know their name in order that we can get all our MP’s to work together.
My MP has promised to help all she can, but there is strength in numbers so please get in touch.
For more info/research see below;-http://vetmed.tamu.edu/gilab/research/cobalamin-informationhttp://www.ncbi.nlm.nih.gov/pubmed/23535754/
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.Reply to my email request for information;-
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.Reply to my email request for information;-
Dear Tracey,
Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.
If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.
I hope this is helpful
BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
Best wishes, Tracey
B12 deficiency can strike at any age, it is not confined to women over 60
Signs & symptoms in infants and children
(List supplied by Sally M Pacholok R.N & Dr Jeffrey Stuart co authors of ‘What’s wrong with my child?’)
• Developmental delay or regression
• Apathy – Irritability
• Hypotonia (decreased muscle tone)
• Weakness
• Tremor
• Involuntary movements
• Seizures (fits)
• Ataxia (Neurological disorder affecting balance, coordination and speech)
• Anorexia and other eating disorders
• Failure to thrive
• Poor weight gain
• Poor head growth
• Poor socialisation
• Poor motor skills
• Language delay
• Speech problems
• Lower IQ – Mental retardation
• Anaemia
• Macrocytosis (large red blood cells) Note – need not be present!
For more information on ‘Red Flags‘ in children please visit
www.b12deficiency.info/children-and-b12/
Please see our posters page to share, download and print these posters.
Raising awareness ; http://www.b12deficiency.info/how-you-can-help/
Best wishes, Tracey
Go away and die quietly, we’re busy
It is rare that I am lost for words – however, I expect after reading this, you might be struggling too.
The below text is a summary of a patient’s experience just last month. I am paraphrasing but the message is very clear. The quality of life of B12 deficient patients, at least to some doctors, simply doesn’t matter. Their pleading for help falls on deaf ears at this particular practice.
Are you sitting comfortably? Here we go –
We had a meeting about treating your ‘normal’ serum B12 level of 334 with B12 injections but have decided that even though you tested positive to parietal cell antibodies years ago, that you are;
HEAVILY SYMPTOMATIC and can demonstrate that your;
7 cardiac arrests,
One major heart attack,
Pulmonary embolism,
Over TEN lengthy stays in psychiatric hospital with added ECT treatment,
A lifetime of complete exhaustion,
Diagnoses of PND, CFS, fibromyalgia, ADHD, bipolar disorder, and, wait for it, – ‘Treatment resistant depression’ could all be directly related to B12 deficiency –
WE CANNOT POSSIBLY TREAT YOU WITH A HARMLESS, LIFE GIVING VITAMIN B12 INJECTION THAT YOU DESPERATELY NEED.
We have decided that although we prescribe many chemical ’off license’ drugs to hundreds of people, including you, at this practice (and mainly to those patients with poor mental health), without batting an eyelid, that we cannot prescribe B12 injections to you because it would be considered to be ’OFF LICENSE’ and we might get slapped wrists.
We as a practice, are all sticking together in this so you have NOWHERE to go even though you have shown us there could be great risk to your health without B12.
We have completely ignored the NEQAS report you gave to us;
http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
We have ignored the all the journals backing up your research.
We have also ignored the NHS website stating that many B12 deficient patients have within range results due to the inaccuracy of the serum B12 test;
http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’
Instead of giving you HARMLESS, LIFE GIVING, B12 injections, we would rather you continue to take the countless, expensive and harmful drugs which we are completely happy to prescribe for you, despite your protestations that they don’t work.
We are also completely happy with the labels we have given you, despite them being common misdiagnoses of vitamin B12 deficiency.
We are rigid, we cannot muster any compassion or understanding and won’t do our own research, we simply can’t be bothered. We don’t care that you merely exist, have been chronically ill for decades and live less than half a life.
We do hope you understand our position?
Now, can you run along and stop wasting our time? We are very busy and very important GP’s. We have lives to save, don’t cha know?
_____________________________________________________________________
Well what the hell do you do with that??
This patient is someone I know. I went to one shocking appointment with them.
I am completely astounded that this patient has the capacity to continue with life despite the trauma, pain and neglect they continue to endure.
This patient deserves care, compassion, understanding and B12, and quite frankly, an enormous medal!
During the appointment I attended, we challenged the GP when it was stated that, for this patient, B12 injections would be ‘Off License’. There was no budging this unfeeling, uncaring, unknowing, cardboard cut out.
Can anyone enlighten me as to why or how b12 injections can be considered ‘off license’ for a heavily symptomatic B12 deficient patient?
Can anyone from the medical profession explain why exactly, patients have to jump through hoops to achieve a diagnosis of vitamin B12 deficiency? The current rationale almost completely ignores symptoms and decides everything on a blood test which is proven to be inaccurate.
Why is it that other conditions have no diagnostic blood test and yet the GP and specialist are completely confident in diagnosing based upon symptoms alone?
How can any clinician feel comfortable diagnosing ‘lab test free’ conditions such as Fibromyalgia, bipolar, schizophrenia, CFS, ME, Parkinson’s and Alzheimer’s etc, without fully and I mean FULLY, ruling out vitamin and mineral deficiencies? It just doesn’t make any sense.
There is something gravely wrong here and this horrendous, cockeyed situation has to come to an end soon, surely?
Although some of us have GP’s who treat us well for B12 deficiency, the shocking case detailed here is not isolated and is a tale to be continued……..
If you too are fighting complete ignorance please find support here;
https://www.facebook.com/groups/174928999276739
If you think you may be deficient please use this page;
http://www.b12deficiency.info/what-to-do-next/
If you want to help us to cut out the middle men who don’t, or won’t care – please sign and share and shout about this petition to help us treat ourselves –
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
See below for more information on the common use of ’unlicensed medicines’. A particular worry is that Metformin is being used for the treatment of urticaria as well as PCOS. I wonder if these prescribers are checking their patient’s B12 levels since this drug drags them down by stopping B12 absorption from food? I bet they’re not.
http://www.nhs.uk/Conditions/Polycystic-ovarian-syndrome/Pages/Treatment.aspx
Metformin isn’t licensed for treating PCOS in the UK, but because many women with PCOS have insulin resistance, it can be used “off-label” to encourage fertility and control the symptoms of PCOS.
Preparations available and licensed indications
Valproate is available in the UK as sodium valproate (Epilim), licensed for epilepsy and semisodium valproate (Depakote), licensed for the acute treatment of mania.
Even though, neither formulation of valproate is licensed for use as a mood stabiliser, there is a significant body of evidence supporting its use.
B12 and Thyroid conference 2015 – an enormous success, incredible feedback and a game changer!
I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;
A passion for educating and exposing truth, unflappable tenacity and humour!
Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.
Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!
Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.
Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.
Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!
Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.
Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;
“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.
I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“
Dr J Younge –
Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!
Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.
For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;
“Congratulations on organising a really interesting day.
The speakers were excellent and inspiring and gave us plenty to think about!”
Dr S Williams
For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)
It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.
It was a fantastic day and I have learnt a lot about how to make it even better next time.
Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.
Thanks to all who supported me in organising this event – you are priceless!
Tracey x
www.b12deficiency.info is my passion, highlighting the effect on mental health, fertility, pregnancy and children is a must.
If you want to help us to access Hydroxobalamin OTC please sign and share this petition.
Lets continue to work together, we will make a difference, please contact me if you would like to learn more.
The pernicious ignorance of B12 deficiency in patients with poor mental health.
Despite the general misconception that B12 deficiency only affects women over 60, this condition does not discriminate. It is those who train our health care professionals and consequently our health care professionals who do. The neuropsychiatric symptoms of B12 deficiency are many and as with all symptoms they can manifest at any age and in either sex.
These include –
• The unborn child
• Babies
• Children
• New mothers
• The middle aged
• The elderly
It appears that very few doctors understand the need to rule out this debilitating neurological disorder once a mental health condition is diagnosed. Of course there are many reasons for poor mental health but to ignore nutritional deficiencies is ridiculous.
One of the most common presenting symptoms of B12 deficiency is depression and yet the chances of a doctor exploring this symptom further to see if there might be a physical cause appears to be very slim.
How many children are incorrectly diagnosed with Bipolar, psychosis, depression when B12 deficiency is the root cause?
How many undiagnosed B12 deficient mothers find themselves devastated by post natal depression following nitrous oxide administration during labour?
How many cases of ‘early onset Alzheimer’s’ remain untested for this easy to treat deficiency?
How many newly diagnosed dementia patients have been taking metformin, or acid suppressants such as Omeprazole?
How many patients live in total confusion when all they lack is the ability to absorb vitamin B12?
How many stroke victims struggling physically and mentally because it never occurred to the clinicians to test for low B12?
How many students unable to complete their studies?
How many lives lost through suicide?
How many careers ruined?
How many lost livelihoods?
How many families broken?
How much money wasted on psychiatric drugs when a vital nutrient is the solution?
How many undiagnosed prisoners are ‘detained at Her Majesty’s pleasure’ for actions and behaviour induced by low B12?
How many patients hospitalised with eating disorders remain undiagnosed with B12 deficiency?
How many patients tested but by clinicians who fail to understand that the B12 serum test is inaccurate?
How many patients rattle with numerous antidepressants given in mega doses due to their reduced efficacy in B12 deficient patients?
The information below is taken from the ‘Fundamental Statistics on Mental Health 2007’
All these statements and statistics have a potential relationship to B12 deficiency and we can only assume that these figures are perhaps even worse now…….
The Fundamental Facts 2007: The Latest Facts and Figures on Mental Health
http://www.mentalhealth.org.uk/content/assets/PDF/publications/fundamental_facts_2007.pdf?view=Standard
How many people experience mental health problems?
• The Office for National Statistics Psychiatric Morbidity report found that in any one year 1 in 4 British adults experience at least one mental disorder, and 1 in 6 experiences this at any given time.
• It is estimated that approximately 450 million people worldwide have a mental health problem.
• 1 in 4 families worldwide is likely to have at least one member with a behavioural or mental disorder.
• The World Health Organisation forecasts that by 2020 depression will be the second leading contributor to the global burden of disease.
Suicide and history of using mental health services
• 42% of people who took their own lives in England and Wales were diagnosed with either a depressive illness or bi-polar disorder, and 20% had schizophrenia or a related disorder.
Postnatal depression
• Post-natal depression, also known as post partum depression, is believed to affect between 8 and 15% of women. Post-natal depression is not the same as the ‘baby blues’ which are very common, but last only a few days.
Dementia
• Dementia affects 5% of people over the age of 65 and 20% of those over 80. About 700,000 people in the UK have dementia (1.2% of the population) at any one time.
• About 60% of dementia cases are caused by Alzheimer’s disease.
• About a fifth of cases of dementia are related to strokes or insufficient blood flow to the brain, these cases being known as vascular dementia.
Children and young people
• The British Medical Association estimates that at any point in time up to 45,000 young people under the age of 16 are experiencing a severe mental health disorder, and approximately 1.1 million children under the age of 18 would benefit from specialist mental health services.
Older people
• Depression affects 1 in 5 people over the age of 65 living in the community and 2 in 5 living in care homes. However, it is likely that only a small proportion of older people with depression are in contact with their GP or mental health services.
• An estimated 70% of new cases of depression in older people are related to poor physical health.
The prison population
• 72% of male and 70% of female sentenced prisoners have at least one mental disorder and 1 in 5 prisoners has four major mental health disorders.
People with poor physical health are at higher risk of experiencing common mental health problems, and people with mental health problems are more likely to have poor physical health.
• Depression affects 27% of people with diabetes, 29% of people with hypertension, 31% of people who have had a stroke, 33% of cancer patients and 44% of people with HIV/AIDS.
• People who experience persistent pain are four times as likely to have an anxiety or depressive disorder as the general population.
Primary care
• Approximately 30% of all GP consultations are related to a mental health problem.
• On average, a person with severe mental health problems has 13 to 14 consultations per year with their GP.
Hospital provision
• The NHS spent about £575 million on acute psychiatric in-patient hospital care in 2005/06,188 about 68% of its budget for clinical mental health services.
Treatment and coping
• According to an online survey by the Mental Health Foundation, of those visiting their GP with depression, 60% were prescribed anti-depressants, 42% were offered counselling and 2% were offered exercise therapy.
Medication
• In 2004, GPs wrote a total of 63.9 million drug prescriptions for mental health problems in England, representing 9.3% of the total prescription by volume.
• Approximately 2 million people of working age in Britain are currently taking psychiatric drugs, most prescribed by their GPs.
•••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••
Family doctors in England are to be paid £55 for each patient they diagnose with dementia, NHS bosses say. (http://www.bbc.co.uk/news/health-29718618)
If we gave GP’s just £1 to test ALL mental health patients for B12 deficiency and then another £1 to treat that patient properly the cost savings could be phenomenal, not just to the NHS but to society as a whole. If only 10% of all the above statistics were found to be B12 deficient it would have a profoundly positive impact on NHS resources.
If you or anyone you know suffers with a mental illness, please have look at this list which is just the neuropsychiatric portion of the common B12 deficiency symptoms. You may be surprised and relieved to find that B12 injections could be the answer to restoring your own or a loved ones health.
• Confusion/disorientation
• Psychosis
• Post natal depression
• Hallucinations
• Memory loss
• Delusion
• Depression
• Suicidal ideation
• Mania
• Anxiety
• Paranoia
• Irritability
• Apathy
• Personality changes
• Inappropriate sexual behaviour
• Violent/aggressive behaviour
• Schizophrenic symptoms
• Sleep disturbances
• Insomnia
• Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems
For more information please visit www.b12deficiency.info/b12-and-mental-health/
Every part of society is affected by mental illness, and every part of society is affected by B12 deficiency. Our health care professionals need to keep this in mind, from midwives, to paediatrician’s, oncologists to psychiatrists. All medical disciplines need to be made aware of the facts.
Even those psychiatric patients who are known to be B12 deficient may still remain very unwell due to the high level of under treatment for this condition. Just four injections per year are not enough to repair those damaged nerves. Far more B12 is needed for this important job.
Unfortunately your doctor may be resistant to your request for testing for B12 deficiency.
Over the past couple of years I have been met with the following statements, from GP’s and psychiatrists;
‘They have no symptoms so it would be a waste of NHS funds to test for low B12 ’.
‘B12 deficiency does not affect mental health’.
‘Tremors and tinnitus are not cause by low B12’
‘They already have a diagnosis of Alzheimer’s and poor mental health runs in the family’.
It appears that once you have a diagnosis of mental illness you may be effectively tidied away and forgotten about.
And if you don’t have a mental health diagnosis your doctor might be keener to find one for you, than to give you the vitamin you desperately need.
I’ll leave you with the letter I was sent following my request for more B12 injections.
Best wishes, Tracey
East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!
Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing? NO?…. neither is the patient. They remain exhausted with regular blackouts.
What are you doing to your patients East Lancashire NHS Trust?
How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?
East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.
Exactly how many patients have been incorrectly misdiagnosed with;
Alzheimer’s/Dementia?
Depression?
Chronic fatigue syndrome?
Fibromyalgia?
Multiple sclerosis?
M.E.?
Psychosis?
Bipolar?
Vertigo?
Congestive heart failure?
Chronic pain disorder?
Anaemia?
Autism?
ADHD?
How many babies fail to thrive?
How many children have a diagnosis of developmental delay, mental retardation?
How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?
How many new mothers sectioned with post natal depression from inactivated B12 supplies?
How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?
How many Strokes and heart attacks?
How many suicides?
East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.
TAKE ACTION NOW – THIS IS SERIOUS!!
Please visit www.b12deficiency.info
http://b12deficiency.info/children-and-b12.html
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
Please sign and share our petition
Best wishes,Tracey
If you think you may be vitamin B12 deficient – please read for ‘What to do next’
This is a page direct from www.b12deficiency.info
Please sign our petition – you will be helping to save lives
Best wishes, Tracey
There are many faces of Vitamin B12 deficiency……….
Please click to download, print, tweet or share this poster
Raising awareness – how YOU can help
If viewed from the web address above this poster has dynamic links behind each image which lead to further information and journals for each age group.
www.b12deficiency.info/what-to-do-next.html
Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter
Thank you, Tracey
www.b12deficiency.info
Neurological symptoms in B12 deficiency are routinely ignored.
I do acknowledge that there are some of us with doctors who know exactly how to treat B12 deficiency, but evidence shows that we are not all that lucky.
Most of us with this condition suffer neurological symptoms. Our problem is that many doctors don’t recognise our symptoms as such and consequently they continue to worsen. The NICE and BNF Guidelines state that if neurological symptoms are present that B12 injections should be given every other day until the symptoms stop improving.
It’s also important to note that many of us are ‘within range’ on a serum B12 test result, but still heavily symptomatic.
When I was diagnosed with Vitamin B12 deficiency my doctor wasn’t really interested in my symptoms, they weren’t discussed and I don’t think they were even noted. I was given my loading dose injections every other day for two weeks and then I was supposed to manage on one injection every three months.
I couldn’t.
I have neurological symptoms. My myelin sheath, the protection for my nerves, has been nibbled away.
My memory was terrible, my bladder let me down, my tongue was sore and swollen, my vision was blurred, my bowel couldn’t muster up the strength to work, my neck, back, and toes burned with pain, and I felt anxious, I could go on and on. I thought I might be one of those people who end up in the news, with ‘early onset’ Alzheimer’s.
I have an injection every week now, but I have fought tooth and nail for this. I have never been treated as per the guidelines regarding neurological symptoms and I am not alone. I have cried with frustration during my GP appointments. I have asked my doctor why she thinks her memory is more important to her than mine is to me. I have been enraged by letters sent to me from experts I have never met, telling me I need antidepressants and psychotherapy instead of this 55 pence injection. Where is the sense in this? I know that antidepressants are not going to heal my damaged nerves – it is the little red B12 vial, cheaper than a chocolate bar, which does this job, perfectly.
B12 deficient patients are routinely under treated, neglected and ignored. It’s clear that we must all suffer some degree of nerve damage, with different sets of neurological problems and yet for some bizarre reason we are largely, all treated the same – poorly, and sparsely. We are all unique, we all have different B12 requirements. Many of us suffer returning symptoms within days of our injections, some of us can go longer, some of us can’t. I know members of the support group I belong to who are ecstatic when their doctors agree to give them their much needed injections every 10 weeks rather than every 12 but we all know that this frequency is enough to keep to us alive but not to repair the damage to our nerves. We need our doctors to give us a chance for optimum healing by listening to us, by taking our health seriously, by not filling us with chemicals we don’t need, but by giving us an essential vitamin.
A newly diagnosed patient should be given B12 loading doses over two weeks and following these, the patient, who suffers neurological symptoms, may be euphoric at being able to get out of bed for the first time in months or even years. This same patient who may feel a zest for life in place of deep depression, could then be told that they now only require one of these life saving, vital, water soluble injections, every three months. This incorrect statement is rolled out to countless devastated and desperate patients with the added untruth, that too much B12 can be harmful. There is barely any recognition of our symptoms, except for, it seems the depression we sink into when our lifeline is cut. Our request for more frequent injections falls on deaf ears but we are freely offered antidepressants as an antidote for our despair.
The depression induced by lack of B12 has one cure alone, tragically this cure for most, is rationed to one tiny ampoule only four times a year. This is madness.
B12 deficient patients should also have had their folate and ferritin levels checked. If these levels are too low our B12 can have a pointless journey through our systems and leave us without improvement.
Some doctors feel that our neurological symptoms are not B12 deficiency at all and so will continue to test, scan, prod and poke saying it is important they don’t miss anything ‘more serious’. We don’t mind this process as long as you continue with our essential injections, they can do only good. Vitamin B12 stops us deteriorating, stop our brains from shrinking, it don’t interfere with any other drugs and there is no known toxicity.
We need the treatment that the NICE Guidelines and BNF guidelines 9.1.2. allows us, injections every other day until our symptoms stop improving. There is no restriction on this – and there shouldn’t be. Nerve damage takes a long time to heal, ask a neurologist – but not these two jokers, see letters 3 and 5 http://b12deficiency.info/letters.html.
Many of us with this condition have soaked ourselves in research in order to be armed with information to keep ourselves alive and well. Numerous occasions arise when this information we collect needs to be regurgitated for our doctors. We remind them of the guidelines repeatedly due to the simple fact that our neurological symptoms are continually misunderstood or ignored.
We don’t understand the confusion our health professionals suffer with the treatment of B12 deficiency because it is SO SIMPLE. Those of us with this condition are fully aware that it affects all body systems, that B12 deficiency affects our brains. It attacks both our central nervous and peripheral nervous systems and that these nerves run throughout our bodies from head to toe the damage wreaking havoc with our daily lives.
Yes it is this serious, but tragically our doctors feel we are making a fuss if we want –
to stay awake for more than three hours a day,
to move without pain,
to walk without wobbling,
to conceive without IVF,
to have a tongue that fits,
to empty our bowels from time to time,
to speak without forgetting,
to hear without constant ringing,
to see without blurring,
to feel calm and relaxed,
to hold down a job,
to have a day without tears,
to remember our loved ones names,
to feel like death isn’t a better option. . . . . . . . . . .
Is this really asking too much?
The guidelines regarding neurological symptoms are plain to see, so all we ask is that these are followed.
Our doctors take the Hippocratic Oath, it states “And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them.”
What happens every day in reality, is criminal.
Best wishes, Tracey
www.b12deficiency.info
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