Description

Multiple Sclerosis (MS) is the most common neurological condition among young adults in the UK, affecting approximately 85,000 people. In most cases symptoms are first seen between ages 20 to 40, and women are more likely to develop it than men. MS is 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. It 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. 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. Read more about the condition here

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. See more details here

Types of MS

MS is a young adult’s disease. It seems to attack 25-40 year olds. MS is typically a relapsing-remitting disease, that is the symptoms come and go. You may have bad periods lasting days, weeks or even years, and good periods. Around 85% of sufferers have this form. The remainder (1 in 6) have primary progressive MS, which just deteriorates from the start. Of those that have the relapsing/remitting form, they may be told they have Secondary Progressive or Benign, depending on their progress after 5 years. Secondary Progressive as the name implies means that the symptoms get worse over time, or the relapses (periods with symptoms) get longer and the remissions (periods without symptoms) get shorter. Benign means that it doesn’t get worse. All of the types of MS are descriptions of symptoms and the progression of symptoms. None prescribe treatment.

Treating MS

Current medial opinion is that MS is incurable; if you feel well then you are in a period of remission. Therefore in our description of the MS sufferers in Shinwell, we’ve described the effects of B12 replacement therapy as remission, even though symptom remission seems to coincide closely with treatment, and symptom relapse with periods when we were required to withdraw treatment. 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.

Case Study

See descriptions of the disease and response to Vitamin B12 replacement therapy on the case studies page.

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. 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

Shinwell Medical Practice has 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 (though Shinwell has the lowest % diagnosed in Co Durham PCT). 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 the 9 considered to have MS in Shinwell, 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 at the practice over a longer period, ie over the time when Shinwell practice was required to withdraw high dosage vitamin B12 replacement therapy. 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. Sufferers with very low B12 may exhibit other deficiencies – damage to endocrine systems are common (cortisol may be needed to rebalance the body’s systems - this is probably why an initial dose of steroids has a positive effect in MS, but subsequent doses do not), and the damage to the digestive system and lack of mobility may cause other deficiencies such as Vitamin D. All of these should be monitored and treated as required.

See also

Multiple sclerosis more info Multiple sclerosis symptoms and diagnosis MS and B12 MS case studies and testimonials

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.