Barts-MS rose-tinted-odometer: zero-★‘s
How are you feeling today? Are you depressed? Do you know what symptoms of depression to look for?
When my first patient with MS committed suicide it came as a real shock to me. He was a very likeable 32-year old man with secondary progressive MS. I used to see him at least once a year. I would go out into the waiting area of outpatients and call his name, he would insist on pushing himself into my consulting room in his wheelchair. He was angry and always very impatient when I insisted on going through the usual list of questions about his bladder, bowel and sexual dysfunction, falls, sleep, spasms, mood etc. When I go to the question about his mood he would always answer me with a question; how would I feel if I was in his position? It was his way of saying, yes, I am depressed what do you expect. He was impatient and was always pushing to get to the stage in the consultation when he could ask me questions about all the things he had been researching on the web.
Can I try this treatment? Is there anything I would recommend to help remyelinate his damage nerves, What do I think of turmeric? Why can’t I have a stem cell transplant? What did I think of very high-dose vitamin D therapy? What about rejuvenation therapy? Why am I not eligible for natalizumab? Are there any trials I can participate in? The questions would come at me like a machine gun firing bullets. What I didn’t realise at the time is that this was his way of trying to find some glimmer of hope in the MS research pipeline; something to give him hope for the future. He was well-read and intelligent enough to know that progressive MS at the time was a one-way street and MS had cost him all of the things he cherished; i.e. his ability to play sport and work, his girlfriend, his friends and more recently his ability to live independently. He had had to move back into his childhood home with his ageing parents for financial reasons. As his life contracted around him he had become increasingly isolated; he had stopped seeing his friends and would rarely go out.
In retrospect, I should not have been surprised to receive an email from his father to say that their son had been found dead in bed with a suicide note. Cause of death suffocation. In the suicide note, he had specifically asked for his remaining savings, just over £9,000, to be donated towards MS research. I suggested to his father that it would be best to donate the money to the MS Society. Unlike Professor Tom Bothwell*, one of my early mentors, who would often attend the funeral of his patients I didn’t go to his funeral despite being invited. One of my regrets; I had let him down both in life and now in death.
This patient taught me that it doesn’t matter how disabled a patient with MS is it is important to be positive and to spread hope. I am not talking about creating false expectations but giving them realistic examples of things that can be done to improve their quality of life and outcome. The latter may be in relation to the latest or future MS research or simple advice about what can be done to improve their day-to-day functioning. Involving patients like this in helping others, in doing research, provides them with a purpose. Don’t underestimate the power of being respected and being wanted. Having self-worth makes life worth living. This is one of the reasons I have become so interested in social capital, the social determinants of health and marginal gains; there is always something you can do to improve the quality of life of someone with MS. Do you agree? This is why we at Barts-MS want to expand our service to provide so much more than neurological support for the patients under our care.
It is clear that mood is a spectrum and it can be quite normal to feel low compared to other times. However, when low mood starts to impact on your ability to function in the home environment (relationships, domestic chores, self-care, etc.), at work (underperforming, missing work, etc.), or socially (avoiding going out or not interacting with family and friends) or you start to have negative and intrusive thoughts about your self-worth and possibly suicidal thoughts, low-mood becomes pathological and you need help.
Depression also impacts how your body functions and causes the so-called vegetative symptoms of depression that could also indicate that you are depressed; these include weight loss and loss of appetite or the opposite of weight gain and increased appetite, insomnia or excessive sleepiness, fatigue, low energy levels, poor concentration and inattention. So if you have noticed a change in any of these ask yourself whether or not you are depressed.
It is important to realise that depression is very common in people with MS (pwMS); the lifetime prevalence of major depression in pwMS is 40-50%. There are many reasons why pwMS get depressed. Depression can be a reactive depression in relation to the emotional response to the diagnosis of MS, losing your job, getting divorced or been told you have progressive disease. However, it can be due to the effects the disease has on the brain. It is important to know that pwMS who are depressed have a much worse outcome in terms of disability progression. I suspect it is not necessarily depression that causes MS to progress or worsen more quickly, but the damage to the brain that causes a worse MS outcome also causes depression. I suspect MS damages the circuits and neuronal networks that lead to depression.
There are many effective ways to treat MS-related depression so don’t suffer in silence. If you are depressed please speak-up contact your HCP and ask for help.
Please note that depression and the definition of depression are cultural. Some societies don’t even have a word to describe depression and hence depression in these cultures usually manifest with other systemic complaints such as fatigue, tiredness, poor concentration, insomnia, pain and reduced cognition. So if you are not sure about being depressed you can always complete one of the many online depression screening tools. I would recommend the HAD (hospital anxiety and depression) scale, which has been well validated in pwMS.
I would be interested to know if you are asked about mood when you have your annual MS follow-up appointment and if you have any advice to give your peers who may be depressed.
* To read about Prof Tom Bothwell please read my Medium post ‘Emulating your Mentor‘.
Binzer et al. Disability worsening among persons with multiple sclerosis and depression: A Swedish cohort study. Neurology. 2019 Dec 10;93(24):e2216-e2223. doi: 10.1212/WNL.0000000000008617. Epub 2019 Nov 8.
Objective: Depression is common in multiple sclerosis (MS), but its impact on disability worsening has not yet been determined. We explored the risk of disability worsening associated with depression in a nationwide longitudinal cohort.
Methods: This retrospective cohort study used linked data from 3 Swedish nationwide registries: the MS Register, National Patient Register, and Prescribed Drug Register. Two incident cohorts were developed: cohort 1 included all registered cases of MS in the MS Registry (2001-2014) with depression defined as ≥1 ICD-10 code for depression; and cohort 2 comprised all cases of MS in the MS Registry (2005-2014) with depression defined as ≥1 prescription filled for an antidepressant. Cox regression models were used to compare the risk of reaching sustained disability milestone scores of 3.0, 4.0, and 6.0 on the Expanded Disability Status Scale (EDSS) between persons with MS with and without depression.
Results: Cohort 1 included 5,875 cases; 502 (8.5%) had depression. Cohort 2 had 3,817 cases; 1,289 (33.8%) were prescribed an antidepressant. Persons with depression were at a significantly higher risk of reaching sustained EDSS scores of 3.0, 4.0, and 6.0, with hazard ratios of 1.50 (95% confidence interval [CI] 1.20-1.87), 1.79 (95% CI 1.40-2.29), and 1.89 (95% CI 1.38-2.57), respectively. A similar increased risk among persons exposed to antidepressants was observed, with hazard ratios of 1.37 (95% CI 1.18-1.60), 1.93 (95% CI 1.61-2.31), and 1.86 (95% CI 1.45-2.40) for sustained EDSS scores of 3.0, 4.0, and 6.0, respectively.
Conclusion: Persons with MS and comorbid depression had a significantly increased risk of disability worsening. This finding highlights the need for early recognition and appropriate treatment of depression in persons with MS.