Multiple Sclerosis - a typically incurable and fatal condition, characterised as either progressive or relapsing/remitting, characterised by muscle wasting and neuropathy.
Around 2 in 1000 people suffer from this condition. It's diagnosed by finding the scleroids, or plaques, in the spinal cord or brain (or both), previously at autopsy (which is a bit late!) but now by MRI scan.
First let me get this straight. We at B12d.org recognise the pain and suffering that sufferers go through - many people who have a diagnosis of MS are members. I'm just asking if it's a known condition, and far from being incurable, if it actually can be cured in many cases!
The strange crabwise gait (sometimes people are accused of being drunk) was characteristic of Pernicious Anaemia in the 19th Century. SubAcute Combined Degeneration of the spinal cord (SACD) is exactly the same thing - loss of sensation and mnotor power, resulting in muscle wastage, as a result of neuropathy). These could be cured in many cases by B12, which according to Scalobrino re-enables the remyelination of nerve cells which restores their function so you get your feeling back, your motor functions back, and the muscle can start to grow back.
So perhpas - and I'm being provocative here - MS is a simple description of the symptoms (detection of multiple scleroids or plaques in the spinal cord), but isn't very helpful when determining a cure. Perhaps we should go back to calling it SACD or neuropahty, and treat the person (and they are always a person, not a disease or a patient) for neuropahy. Of course wasted muscle takes a huge length of time to grow back. Of course once a nerve has actually died (often a long time after the myelin sheath degenerated, so there is usually a window of opportunity for treatment) it can't be replaced, but in many cases it can regain full function.
I'm afraid the first thing you can expect is Fortitude. It's going to be painful - as your nerves start to function again, you will feel all sorts of signals that your brain hasn't had for ages. Any unknown signal the brain interprets as pain, so you will feel pain in your arms and lets, hands and feet. It won't be real pain, but your brain will interpret it as pain.
Then you'll need Patience. Are they the same thing?
Damaged nerves and muscles will take time to recover. You will need to rest so you can devote your ne-found energy tot he healing process rather than gallivanting off (although a bit of gallivanting never did anyone any harm).
But in many cases, and we've seen it in our own practice, people diagnosed with MS recover fully and go back to a normal life.
Frankie tells of how she suffered, the tests she had to endure until doctors worked out what was wrong, and what a difference it has made.
Julia found her eyesight going as her eyes refused to focus on the same things as each other. She's been for all sorts of tests and treatment, but now that she's on B12 replacement therapy she's starting to see an improvement.
The definitive and original guide to B12 deficiency, Dr Chandy interviewed by Chris Jackson of UK BBC Inside Out Team broadcast 31 Oct 2008.
Dr Joseph Chandy explains symptoms and shows the restorative effect on one patient (other patients' families have asked that we edit out their stories unfortunately)
The Scottish Parliament discusses Pernicious Anaemia and vitamin B12 deficiency on Wednesday 7 March 2012.
This video is over 1 hour long and represents real political change - we are at last on our way.
The local MP (Grahame Morris MP for Easington - who was a BMS (BioMedical Scientist) in the labs at Sunderland Royal Infirmary) interviews people with B12 deficiency to hear their story (August 27 2010). Here Jane describes the symptoms, and how she can't wait for her next B12 injection (in fact, she knows that she needs injections every 2 weeks because she's keeping a diary of the symptoms). We're restricted how often the GP can give injections, which is why we want to raise awareness.
Dr Chandy was nominated for the North East Local Heroes award. The interviewer was at first surprised - people don't get awards for doing what they are paid to do - but she persisted.
Janette first appeared in the BBC InsideOut documentary in October 2006. Since then the NHS has forced her doctor to withdraw B12 replacement therapy on a number of occasions, and she tells of her struggles with having B12 and then having it taken away.
She has bravely agreed to be filmed without her usual wig, but her memory is playing up because it is so long since her last injection.
Donna, like so many women, wants to live a normal life. Vitamin B12 could give her that chance.
New documentary out from Elissa Leonard in North America, featuring Sally Pacholok and many other internationally renowned experts.
Susan gets very tired, which isn't much fun especially as she has so much to do. Here she tells her story.