Description

Multiple Sclerosis (MS) is considered to be the most common neurological condition among young adults in the UK, affecting approximately 85,000 people. It is particularly devastating because it takes people in the prime of life, especially people who are fit, active and healthy.  But we believe that many cases may not actually be MS, but only an MS-like presentation.

In both conditions, symptoms are first seen between ages 20 to 40, and women are more likely to develop it than men. The symptoms observed in both conditions are the result of damage to myelin – a protective sheath surrounding nerve fibres of the central nervous system (CNS). When myelin is damaged, this interferes with messages between the brain and the arms, legs and other parts of the body. MS is probably an auto-immune condition (see also, for example, Pernicious anaemia), in other words it is the body’s own immune system that breaks down the myelin and causes the disease.  The most likely etiology of MS-like presentation is the same.

There has been a lot of speculation why it happens and what triggers it, but in all honesty we don’t know. MS symptoms are unpredictable and varied. For some people, MS is characterised by periods of relapse and remission (the symptoms appear and disappear) whilst for others it has a progressive pattern. In MS-like presentation, the relapsing and remission, and whether the symptoms progress or not, appears to be related to whether any action is taken to prevent or cure.

Diagnosing MS

MS is really a description of symptoms, rather than a description of the etiology (cause). MS is difficult to diagnose because it shares many symptoms with other conditions. Sufferers typically present with a cluster or collection of neurological symptoms at the same time – if there is no history it is treated as a clinically isolated syndrome (CIS) (see longer section on diagnosing for more details). This is not diagnosed as MS, although between 30 and 70% of people recorded with a CIS go on to receive a diagnosis of probable MS. The symptoms of the condition are numerous and unpredictable, and they affect each person differently. Some of the most common include problems with mobility and balance, pain (or loss of feeling, numbness, and pins and needles), muscle spasms and muscle tightness. With progression of the disease comes fatigue, difficulty thinking or difficulty with memory, depression and unstable moods. Typically if you visit your GP with unexplained neurological symptoms, then they may refer you to a neurologist (depending on the severity of the symptoms), and the neurologist will explain what happens next. Diagnosis of MS is only confirmed after a series of tests. 

There are a number of different progressions of MS (which are the names given to the different ways MS is going), but the reasons for the condition are probably all the same.

MS-like presentation

People with B12 deficiency may go through a series of stages, from mild B12 deficiency (often characterised by pins and needles, memory loss, headaches and mood swings) through progressive nerve damage, immunological damage and so on (see the rest of this site for more information).  The neurological damage can often look remarkably similar to (or even identical to) MS, including a relapsing/ remitting and progressive pattern.

The key difference is that we know that B12 deficiency is caused by a lack of B12, and restoring the B12 in the body helps both by preventing further deterioration, and in many cases by restoring normal nerve function (in other words, the damage is healed).

Since B12 is normally present in the body and vital for a number of biochemical pathways, supplementing your body with B12 is not dangerous.  Actually I should qualify that - there are many natural substances which the body needs, which have to be in the body in precise amounts.  B12 is different: government studies (and of course numerous academic papers) have shown that it is completely safe in amounts far greater than the body needs, in fact some doses of B12 used by doctors are designed to "swamp" the body and remove toxins very quickly (within seconds) simply by the sheer quantity of B12.  B12 is completely safe.

it is definitely worth mentioning at this point that for many people with obvious MS-like symptoms, the damage has been developing for a long time and it will take time to heal - but there's no time like the present to begin!

Treating MS

Current medial opinion is that MS is incurable; if you feel well then you are in a period of remission. For relapsing/remitting sufferers, disease-modifying drugs (drugs that reduce the symptoms eg take away the pain or slow down the tremors) are often used during episodes with those symptoms. Medical knowledge is that these make little difference for patients who are diagnosed as Primary Progressive.

Treating MS-like presentation

If the nerve damage is caused by B12 deficiency, then restoring B12 status (usually through injections) will usually see the symptoms go into remission to the point where they may be undetectable (basically, you're well, but since nobody can say that if you have been diagnosed as having MS, we can't say it either.  Then again, if it looks like a duck ...)

Many people whose symptoms have developed to the point where a doctor suspects MS will have other damage too - damage to the digestion, immune system, endocrine system, etc.

This means that you may have developed other deficiencies - common deficiencies are Vitamin D, early morning cortisol, thyroxine, magnesium, potassium.  A healthy body can usually keep all of these substances balanced, but if you think you may have MS-like presentation, then your doctor should run diagnostic tests to check for deficiency because you may need some help with these (and any other) shortages until your body is healthy enough to put them right itself.

It is also common to treat MS with steroids.  Our supposition is that steroids work because they release any lingering B12 in your stores, even when your stores are so low that there's only a tiny drop left that the body can't get access to without the additional steroids.  Steroids also make the cells use the B12 more "enthusiastically".  If your GP wants to give you steroids at the same time as (or after) B12 injections, then this could boost the use of the B12 in the short term, which is a good thing as long as you are getting more B12 to restore your body stores.  This may explain why the effects of steroid injections on their own wears off.

Where does MS come from?

You don’t catch MS from someone with the condition. How you develop MS isn’t properly understood. It isn’t directly inherited and unlike some conditions, there is no single gene that causes it. It is possible that a combination of genes makes some people more susceptible to developing MS although the chances of a child developing MS from an affected parent are only 2%. There may be environmental factors. It is virtually unheard of in places like Malaysia or Ecuador but relatively common in Britain, North America, Canada and Scandinavia.

Where does MS-like presentation due to B12 deficiency come from?

It is widely documented that Vitamin B12 deficiency symptoms are more common in people who live further from the equator, and the likelihood of developing Vitamin B12 deficiency is inherited(Elias, van Noord et al. 2005; Verkleij-Hagoort, van Driel et al. 2008). The likelihood that MS is inherited is played down, but it is more common in relatives, though concordance in monozygotic twins is 35%, (ie identical twins don’t always both have MS if one has it). But before you all move to Africa, this hasn’t been properly tested.

Similarities to Vitamin B12 deficiency

If you have read much of this web site already, you will recognise many of the same symptoms. MS is a description of symptoms, whereas Vitamin B12 deficiency is a description of a cause. For example, MS describes what a person is suffering, whereas Vitamin B12 deficiency doesn’t say what a person is suffering but offers a diagnosis as to what will cure the problem.

Treatment with Vitamin B12 replacement therapy

In a population of 5,500, the Patient Support Group recognises 9 people diagnosed by neurology consultants to have ‘probable’ MS. This is about average – the prevalence in UK is (according to the MS Society’s web site) close to 150 per 100,000 or 1.5 per 1,000. Many people considered to have MS do not receive a definite diagnosis but remain under the supervision of a consultant neurologist and care of an MS nurse. Of these 9, one patient continues to refuse any treatment. The remaining 8 have all received B12 replacement therapy as part of their treatment for the condition. It’s important to emphasise that the usual disease-modifying medication is also given where needed, and as MS is a relapsing/remitting condition, any improvement may not be due to the treatment but may be due to the cyclical nature of the disease. None of the 8 have required beta-interferon – this is the strongest pain-killer normally given for MS and has numerous side-effects. In all cases, the remission of symptoms has been measurable and coincidental with treatment. Some patients have been treated over a longer period, ie over the time when high dosage vitamin B12 replacement therapy had to be withdrawn (note this was not for clinical reasons - B12 is, was and probably always will be completely safe). For them the changes have been dramatic and measurable – during B12 replacement therapy they experience remission of symptoms, and during withdrawal of therapy not only do the symptoms relapse but often result in worse expression of symptoms. We believe there is a ‘window of opportunity’ beyond which some symptoms are irreversible. This is supported by the medical literature – when nerve axons lose their myelin sheath initially it is possible to grow the myelin sheath back. But once the axon has withered, it is very unusual for an axon to re-connect. Any delays to administering treatment, and any withdrawal of B12 replacement therapy, run the risk of making the symptoms permanent. It is our hypothesis that MS is an expression of lack of B12 available to the tissue and that progression is due to failure to treat within the window of opportunity. At no point have we withheld other recommended treatment for MS symptoms. As a side note, vitamin B12 is known to be important in energy metabolism and many other biochemical pathways. 

Links to:

http://en.wikipedia.org/wiki/Multiple_sclerosis - Wikipedia Multiple Sclerosis article http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/Introduction.aspx - NHS Choices – Multiple Sclerosis http://www.mssociety.org.uk – Multiple Sclerosis society

References

Elias, S. G., P. A. van Noord, et al. (2005). "Childhood exposure to the 1944-1945 Dutch famine and subsequent female reproductive function." Hum Reprod 20(9): 2483-2488. Verkleij-Hagoort, A. C., L. M. van Driel, et al. (2008). "Genetic and lifestyle factors related to the periconception vitamin B12 status and congenital heart defects: a Dutch case-control study." Mol Genet Metab 94(1): 112-119.