Everyone has times when they feel low and it would not be surprising to find that people with MS have times when it is difficult to deal emotionally with some aspects of life. Anger, frustration, anxiety and disappointment can come to the surface.
For some people, these feelings do not pass after a reasonable period of time and turn into a deeper depressive illness – a longer lasting state of low mood which interferes with daily life. For some people, depression is a consequence of dealing with a long term illness. For others, the depression can be one of the symptoms of their MS as it is caused by MS affecting a part of the brain involved in controlling mood.
This study looked at the proportion of people with MS reporting depression or anxiety. 7,786 adults with MS enrolled in the UK MS register took part. 14% had primary progressive MS, 62% had relapsing remitting MS, 9% had secondary progressive MS and 15% did not know which type of MS they had. The average age was 51. The average time since diagnosis by a neurologist was 12 years but the average time since first symptoms was 17 years. 70% were women.
The participants completed a questionnaire called the Hospital Anxiety and Depression Scale (HADS). It asks people to say whether they experience certain thoughts and feelings often, sometimes, rarely or not at all. Examples from the questionnaire are "I feel miserable and sad", "I have lost interest in things", "Worrying thoughts constantly go through my mind" and "I feel life is not worth living". The answers are scored and the scores give a measure of how anxious or depressed someone feels.
The researchers defined a score of eight or more on the HADS scale as representing a diagnosis of anxiety or depression. They were able to look at how frequently anxiety and depression occurred in people with MS but also how anxious and how depressed they were.
They found that just over half (54%) had anxiety and almost half (47%) had depression which is higher than in the general population. Being both anxious and depressed was common.
The results were also analysed for various groups of participants. They found that women with relapsing remitting MS were more anxious than men with relapsing remitting MS. These women were also more anxious than women with other types of MS.
Both men and women with secondary progressive MS were more depressed than men and women with other types of MS.
The researchers suggest that the mental health needs of people with MS should be better addressed.
Jones KH, Ford DV, Jones PA, et al.
A large-scale study of anxiety and depression in people with multiple sclerosis: a survey via the web portal of the UK MS register.
PLoS One. 2012;7(7):e41910.
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More about anxiety and depression
Mild depression may not need treating but symptoms that persist or are severe should be addressed by seeing a health professional such as your GP or MS nurse who can refer you if necessary. It can be difficult to speak about these issues as some people may think that they should deal with it themselves or that others will judge them badly for having mental health issues.
This research shows how common depression and anxiety are for people with MS so an individual is not unusual or in any way to blame if they are experiencing these symptoms. Help is available and talking to people, whether friends and family or health professionals, is the first step to take. Treatment may be with well established medication or by using "talking therapies" like cognitive behaviour therapy (CBT).
Read more about depression in the A-Z or MS.
Benign MS – how common is it really?
People with benign MS have infrequent, very mild attacks separated by long periods with no symptoms. As the defining characteristic of benign MS is the long-term absence of symptoms, it can only be diagnosed looking back after ten or more years.
Identifying who has benign MS is important as it could prevent the person being treated with unnecessary drugs, such as the disease modifying treatments if there are few, if any, relapses. Also, it could save the person unnecessary worry about their future.
However, there has been debate as to whether benign MS is a distinct form of MS or whether it represents people who have a slower developing and milder form of relapsing remitting MS.
This study examined the clinical records of 874 people with relapsing onset MS in France to see how many could be classified as having benign MS after ten, 20 or 30 years after symptoms began.
Disability was assessed using the Disability Status Scale (DSS), an earlier version of the EDSS scale more commonly used now. Two different definitions of benign MS were used: either a DSS score of two or less or a DSS score of three or less, ten years after onset of symptoms. Two on the DSS scale is defined as minimal disability in one functional system. Three is defined as moderate disability in one functional system or mild disability in three or four functional systems, though fully ambulatory. You can read the definitions of functional systems here
Overall, the researchers found that just over half (58%) had a score of two or less after ten years of symptoms. Out of this group, nearly half (42%) still had benign MS ten years later (20 years in total since onset) and almost half of those (41%) were still classified as having benign MS after 30 years.
Overall, three quarters (74%) had a score of three or less after ten years of symptoms. Out of this group, just over half (54%) were still classified as having benign MS after a total of 20 years and 60% of these remained in that category after 30 years.
The researchers concluded that having a DSS score of two or three after ten years cannot predict whether the MS will remain benign or not. Overall, the proportion of people whose MS remained benign was halved every ten years. They comment that benign MS may not be a helpful term as it cannot accurately predict whose MS will stay benign in the longer term.
Leray E, Coustans M, Le Page E, et al.
'Clinically definite benign multiple sclerosis', an unwarranted conceptual hodgepodge: evidence from a 30-year observational study.
Mult Scler. 2012 Aug 2. [Epub ahead of print]
More about types of MS
This research adds to the evidence that, rather than being a static form of MS, benign MS is probably the lower end of the spectrum of relapsing remitting MS where the disease activity is developing more slowly or is not so apparent.
Symptoms and symptom management
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