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 vial 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.

Please consider signing and sharing our petition – you will be helping to save lives

Newly diagnosed? Please visit – http://b12deficiency.info/what-to-do-next.html

Raising awareness – How YOU can help

To join Pat Kornic’s Life saving support group

NICE Guidelines

BNF registration – http://www.bnf.org/bnf/registration.htm

See Andrea McArthur’s Petition.

Dear Doctor, have you been giving vitamin B12 deficiency another name?

You could probably visit ANY street in the world and find B12 deficient residents. In 20 homes you may find eight people who are deficient, and this may be just two families, including the children of course.  B12 deficiency is very common, however it is very commonly given another name.

My symptom list overlaps with those of my loved ones, however some we don’t share at all. Please remember we don’t all present in the same way.

What we need our doctors to recognise is that misdiagnosis of B12 deficiency is, in itself, an epidemic. Please visit www.b12deficiency.info/misdiagnosis.html

We need our doctors to diagnose correctly and of course to rule out what may be considered to be ‘more serious’ conditions. Please start by ruling out B12 deficiency, make this condition your first port of call. After all, it’s safe, it’s exceedingly cheap to treat and it does not interfere with any other treatment you might feel it appropriate to explore.

I know a B12 deficient patient who has been restricted to quarterly B12 injections. They have also been given, lithium and its associated monitoring, anti psychotics, anti epileptics, anti depressants, MRI scanning, CT scanning. We know she deteriorates because those in charge of her care refuse to recognise the vital importance of this essential vitamin and that each of her symptoms traces it roots to B12 deficiency. Tragically this is not an isolated case.

In the face of flawed serum B12 tests, using a therapeutic trial of B12 loading doses whilst you spend the time ruling out, or confirming other illnesses is quite simply, common sense and good medical practice.

We need our doctors to KNOW the symptoms of B12 deficiency, yes there are a lot, but you have been trained to retain information, learning the symptoms of this condition will save more lives than you can imagine, I list them below.

Remember, this deficiency affects ALL body systems but not every sufferer will present in the same way, each family member can have a different set of symptoms and please don’t forget the children!  If you diagnose a mother, make it your job to screen any children too.

Make it your job to listen to your patient’s when their symptoms return only a week after an injection. Make it your job to follow the BNF guidelines and give the injection every other day until the patient’s symptoms stop improving.
Make it your job to understand the need for optimum ferritin and folate levels. Treat your patient’s as individuals, teach them to self inject, as you do your diabetic patients, just think of the nurses time saved! Put their B12 on repeat prescription so they don’t need to plead for health,  this will free up more of your time.
Please, please, please,  skip the cyanocobalamin tablets unless you KNOW, without a doubt, that your patient’s deficiency is due to diet alone.

Many with this condition have been misdiagnosed, they become expensive to treat, some cannot contribute to society and this costs the NHS a fortune.   You will see that the following conditions share many vitamin B12 deficiency symptoms.

I hope you will look closely at the diagnoses you have made for your patient’s and that you can find it within yourself to revisit the treatment prescribed.

Multiple sclerosis
• numbness and tingling
• blurring of vision
• vertigo
• tremor
• ataxia
• fatigue
• chronic pain
• muscular spasticity
• muscle weakness and tightness
• bladder incontinence
• constipation
• cognitive problems
• anxiety
• depression
• erectile dysfunction

Alzheimer’s
• forgetfulness
• mood swings
• speech problems
• vision problems
• delusions
• incontinence
• weight loss
• loss of appetite
• dysphagia
• memory loss
• increased vulnerability to infection
• difficulty moving
• disorientation
• difficulty performing spatial tasks

Parkinson’s
• tremor
• stiffness of muscles
• dystonia
• postural instability
• depression
• anxiety
• cognitive impairment
• delusions
• sudden outbursts of emotion
• poor concentration
• psychosis
• urinary incontinence
• constipation
• erectile dysfunction
• dysphagia
• orthostatic hypotension

CFS
• fatigue
• forgetfulness
• confusion
• palpitations
• dizziness
• balance problems
• IBS

Congestive heart failure
• fatigue
• breathlessness
• ankle swelling
• a persistent cough
• lack of appetite
• weight loss
• tachycardia
• depression
• anxiety

Fibromyalgia
• slowed or confused speech
• cognitive impairment
• widespread pain
• stiffness
• fatigue
• IBS
• inability to regulate body temperature
• tinnitus
• tingling and numbness
• anxiety
• depression
• painful periods

I could of course go on…… and on …………

Here are the symptoms of B12 deficiency

Neurological
• Tinnitus.
• Tremor.
• paresthesia – numbness, tingling and pain.
• Confusion / disorientation.
• Weakness of legs, arms, trunk.
• Impaired vibration – position sense.
• Abnormal reflexes.
• Unsteady or abnormal gait / falls.
• Ataxia (Neurological disorder affecting balance, coordination and speech).
• Balance problems.
• Difficulty walking.
• Dizziness.
• Restless legs.
• Visual disturbances / decreased-blurred vision / damaged of optic nerve.
• Forgetfulness, memory loss.
• Dementia / intellectual deterioration.
• Impotence.
• Paralysis.
• Impaired fine motor coordination.
• Muscular spasticity.
• Bladder or bowel incontinence.
• Impaired pain perception.
• Nocturnal cramping.
• Disturbance in taste and smell.
• Optic atrophy.

Neuro psychiatric
• Psychosis
• Depression / suicidal.
• Post natal depression.
• Irritability.
• Paranoia.
• Mania.
• Hallucinations.
• Violent behaviour.
• Personality changes.
• Apathy.
• Anxiety.
• Delusions.

Haematological signs and symptoms
• Anaemia
• Macrocytosis (large red blood cells).
• Hyper segmented neutrophils.
• Generalised weakness, fatigue.
• Breathlessness.
• Pallor / jaundice.
• Chronic fatigue.

Vascular Problems
• Orthostatic hypotension / Postural hypotension

Female
• Infertility.
• Recurrent miscarriage.
• Abnormal PAP smears.

Male
• Infertility.
• Impotence.
• Low sperm motility.
• Low sperm count.

Gastrointestinal
• Loss of appetite/weight loss or anorexia.
• Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals).
• IBS – Irritable bowel syndrome.
• Constipation.
• GERD – Gastric reflux disease – ulcers / mouth ulcers.

Additional Signs and Symptoms
• Dry cracked corners of the mouth.
• Premature greying.
• Glossitis – swollen / sore tongue, geographic tongue.
• Fainting/light headedness.
• Osteoporosis.
• Symptoms mimicking Parkinson’s and MS.
• Nominal aphasia – difficulty recalling names or words.
• Radiculopathy, spinal nerve pain – commonly in lower back and neck.
• Increased susceptibility to infections.
• Poor wound healing.
• Loss of appetite.

Please click here to see the signs and symptoms in children http://b12deficiency.info/children-and-b12.html

Please also see this page http://www.b12deficiency.info/what-to-do-next/

Raising awareness – How you can help

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

The Ignorance of Vitamin B12 Deficiency in Children

B12 is tragically undiagnosed and misdiagnosed in children, for many doctors testing for this deficiency is not even on their radar so it’s missed. In the rare cases when it is tested, there’s every likelihood it won’t be diagnosed due to the dangerously low lab reference ranges in the UK – as ridiculously low as 110ng/L at East Lancashire NHS Trust. If a child is vegetarian or vegan and is not being given a supplement for B12 or was breast fed by a vegetarian or vegan mother who was not advised by their clinician’s to supplement B12, the risk of this deficiency is much higher.

In children who are heavily symptomatic and their deficiency it is not diet related, they may have B12 serum levels which are within range or even look like ‘healthy levels’.  It would be pertinent to carry out further tests such as MMA, Homocysteine and the Active B12 test please visit http://b12deficiency.info/testing.html  Sadly the B12 serum test is flawed but this information is taking it’s time to filter through to clinicians. See here – http://www.ukneqas-haematinics.org.uk/content/News.asp?id=40

If all symptomatic children with a B12 level below 500ng/L were treated without question and worried parents pleas for help listened to, this would go some way  towards halting the untold suffering that families cope with every day. Tragicaly though, many of these children leave their doctors surgery with drugs to treat a misdiagnosis of autism or ADHD. These drugs may or may not modify their symptoms, but the fact remains that deterioration caused by the lack of B12 will continue without the essential injections. A therapeutic trial of B12 injections would be extremely valuable for ‘within range’ symptomatic children. These should be carried out with continuous every other day injections in the presence of neurological symptoms. http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

If a family has a high prevalence of diagnosed Pernicious Anaemia then it is quite simply ridiculous not to screen children in these families. In adults this deficiency, if identified early enough, can be treated effectively and simply, reversing all symptoms. In children the story can be very different, the nervous system is still developing and if this vital nutrient is lacking then the damage may be irreversible.

All health professionals need to eradicate the incorrect idea that this deficiency only affects women over 60. They also need to listen to terrified parents who know that their children are suffering from the same serious symptoms that they themselves, experience.

See the information below supplied by Sally Pacholok R.N. and Dr Jeffrey Stuart.  It would also be a good idea to buy their book – it really does save lives.

http://www.amazon.co.uk/Could-be-B12-Epidemic-Misdiagnoses/dp/1884995691/ref=sr_1_1?s=books&ie=UTF8&qid=1379713769&sr=1-1&keywords=could+it+be+b12

Signs & symptoms in infants and children

• 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!

Red flags of B12 deficiency in infants, children and Teenagers

If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency.

• Movement problems, including difficulty in walking or writing.

• Mental changes – irritability, altered mood, poor memory, “flat” emotional tone, autistic-like withdrawal.

• Vision problems/abnormalities.

• Slowed weight and height gain.

• Leg pains or other abnormal sensations.

• Fatigue.

• Loss of appetite.

• An abnormally small head circumference in infants or toddlers.

• Apathy,lethargy, or irritability.

• Involuntary movements, such as arm waving in infants or toddlers.

• Tics.

• Grey hairs / premature greying.

• Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child.

• A rooting reflex after eight months of age (this reflex is usually absent after six months of age.

• A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body’s stores of B12 and cause severe neurological damage.

• Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health).

• Chronic constipation.

• A diagnosis of developmental delay, autism, cerebral palsy, mental retardation, or other neurological disorder.

• Severe food allergies or sensitivities.

• A diagnosis of coeliac disease or gluten enteropathy.

• A thyroid disorder or other autoimmune disorder.

• A history of stroke or a diagnosis of arteriosclerosis.

• A diagnosis of any psychiatric or behavioural disorder including ADHD.

• A diagnosis of Downs Syndrome.

List Information provided with kind permission of Sally M. Pacholok R.N. & Dr. Jeffrey J. Stuart.

 

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Please visit

http://www.b12deficiency.info/children-and-b12.html

Raising awareness;

http://www.b12deficiency.info/how-you-can-help/