When I described in a post that I was having flashbacks, related to possible post-traumatic stress disorder (PTSD) from my accident, it struck a chord with pwMS who bravely described their own flashbacks about the way their diagnosis of MS was handled. In response to this, we teamed up with shift.ms to do an online survey of its members. We advertised the survey via the blog and many of you participated. The results of this survey were so worrying that we submitted an abstract to the Association of British Neurologists (ABN) meeting. This abstract was accepted and here is the poster for you to read.
This work made me realise that this is a serious problem and we really need to do something about it, i.e. to ensure that the next generation of neurologists learn how to tell their patients that they have MS in a way that is supportive and gives hope. We really don’t want another generation of pwMS suffering from PTSD. With my renewed focus on MS prevention, I really don’t have time to run with this programme of work myself and I am hoping some young and highly motivated person picks up the baton and makes it happen. We need a national training programme for aspiring MSologists and other HCPs on how to give the diagnosis of MS in a way that doesn’t result in PTSD. In parallel, we need national support programmes for pwMS to deal with the emotional rollercoaster ride that inevitably comes after being told you have MS.
Don’t you think it is shocking that in 21st-century pwMS are left traumatised with flashbacks because of the way their MS was diagnosed? Are you not disappointed that most MS services don’t have support structures in place, similar to those in cancer services, to counsel and support their patients when they are diagnosed with MS?
Let’s make a difference so that the next generation of pwMS don’t suffer from PTSD.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
I look after a patient with MS who is now in her late 60’s. She was diagnosed with MS almost 30 years ago in the early ’90s. She has done very well and has by definition benign MS. Apart from mild unsteadiness of gait, a weak right leg that causes a mild limp when she is tired and back pain, she is fully functional. She was treated with interferon-beta for 14 years and after having no relapses for over 10 years she decided to stop taking interferon-beta. She made the decision to stop interferon-beta treatment when she retired in her early 60s. Her only ‘MS medication’ is 300mg of gabapentin at night; this helps dull the back or myelopathic pain so she can get a good nights sleep.
Despite having MS and a good prognosis she suffers from PTSD (post-traumatic stress disorder) in relation to how her MS was diagnosed by a private neurologist in London. She had a prior history of vertigo and unsteadiness of gait and had developed weakness of her right leg, presumably from a spinal cord attack. This was before the world-wide-web and DMT era so most people in the general population did not know a lot about MS; their knowledge of MS was based on a billboard advertising campaign of the MS society showing young pwMS in wheelchairs. The idea of the MS Society’s campaign at the time was to scare the general public to donate money for research. In addition, to this, the poster child of MS at the time was Jacqueline du Pré, the celebrated British cellist, who had tragically died at the age of 42 from MS. Jacqueline du Pré had died quite recently in 1987 and as her death had been extensively covered on TV and in the newspapers. The general public’s view of MS in the late ‘80s and ‘90s was not a very good one; MS was a disease that struck you down when you were young and invariably caused disability and early death. How things have changed!
The private neurologist who saw my patient was not an MS expert and had not prepared my patient for the diagnosis. When she returned for her follow-up or diagnostic appointment he simply walked up to an old backlight x-ray box on which he had pre-arranged her MRI scans and said without looking at her that she had a large number of white blobs on her MRI, which confirmed his suspicions that she had MS. He then turned around and said that he will write to her GP with the details. And that was the end of the consultation; no time for questions, no information on MS its treatment or prognosis. My patient recalls having to walk out of the consultation with a cold panic enveloping her. Tragically on catching the tube home she ended-up opposite one of the MS Society’s posters of a young person with MS with a zip down their spine; the implication that the damage MS had done to the spinal cord was responsible for causing the disability. My patient recalls this person in the poster, leaning forward in a wheelchair. This is clearly not the kind of poster you would want to see minutes after you have been told that you have MS.
To this day my patient gets regular (almost daily) and intrusive flashbacks of this experience. These flashbacks are associated with a feeling of anxiety or panic, palpitations, hyperventilation, hot flushes, sweating and a feeling of doom. The flashbacks can come on spontaneously, but typically happen when she needs to come to the hospital and particularly when she has an MRI scan. In fact, MRI is such a problem that she has now refused to have repeat MRI studies. The white blobs have become a bogeyman and she imagines them expanding and suffocating her. Her GP has diagnosed her as having PTSD or post-traumatic stress disorder and had prescribed an SSRI (selective serotonin reuptake inhibitor), which did help reduce the frequency and intensity of the flashbacks. However, as the SSRI caused weight gain the patient decided to stop taking it. She has subsequently found CBT (cognitive behavioural therapy) and mindfulness or meditation helpful, but clearly not a cure.
Interestingly, as I make a slow physical recovery from my injuries, I have started to have flashbacks about my recent accident. These are not intrusive and are typically triggered by crossing and traffic intersection or when I hear a motorcycle in the distance. These flashbacks are fleeting and not associated with any systemic symptoms. I, therefore, suspect flashbacks are a normal phenomenon for people who have just suffered a traumatic experience, but simply experiencing them provides a context and a deeper understanding of how traumatic it can be for someone to be diagnosed with MS or for that matter any chronic disabling disease.
My patient above may be an extreme example, but when asked a large number of pwMS tell me the worst part of MS is being told you have MS. In the Italian study below a quarter of pwMS have symptoms of PTSD and more than 1 in 20 have a confirmed diagnosis of PTSD. This is way more common than I expected this phenomenon to be. The question I ask is why are we HCPs so bad at communicating the diagnosis of MS? Is there anything that HCPs can do to improve the experience?
Nowadays most people who turn out to have MS already suspect the diagnosis because they have asked Dr Google. Is this a good or bad thing? Does it cause more or less anxiety going into a consultation suspecting the outcome?
George Pepper, one of the cofounders of shift.ms talks about his diagnostic experience as being a very poor one in that there was no support for people like him. This is why he started shift.ms, to create an online resource centre and supportive community to help people, particularly young people, come to terms with the diagnosis of MS. The Shift.ms YouTube movie Gallop is almost autobiographical and captures some of George’s experiences before and during the diagnostic phase of MS. If you haven’t watched the video before I would recommend it.
What were your experiences like? Have any of you developed PTSD as a result of being diagnosed with MS? Do you have any advice for other people with MS?
Chronic and life-threatening illnesses, such as multiple sclerosis (MS), have been identified as significant stressors potentially triggering posttraumatic stress disorder (PTSD). The study aims to investigate the prevalence of PTSD according to Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, Text Revision (DSM-IV-TR) criteria in a large sample of patients with MS. A total of 988 patients with MS were screened with the Impact of Event Scale-Revised, and then assessed with the PTSD module of the Structured Clinical Interview for DSM-IV and with the Clinician-Administered PTSD Scale to confirm PTSD diagnosis. Posttraumatic symptoms were reported by 25.5% of the sample. A confirmed diagnosis of PTSD was found in 5.7% of patients, but prevalence could reach 8.5%, including also dropout patients. Further studies are needed to evaluate if adjustment disorder could better encompass the frequently encountered subthreshold posttraumatic stress symptoms and how clinicians can deal with these symptoms with appropriate interventions.
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