Many people with MS are traumatised by how their MS was diagnosed. It doesn’t have to be this way, and there are things you can do to relieve the symptoms.

Key points

• Despite advances in knowledge about MS, a diagnosis of the disease can be traumatic, especially if it is communicated in an insensitive, abrupt way.
• More than one in 20 people with MS have a confirmed diagnosis of post-traumatic stress disorder (PTSD) relating to their diagnostic experience.
• Symptoms of PTSD include flashbacks of the trauma, panic attacks or racing pulse when remembering it, nightmares and difficulty sleeping.
• Interventions such as cognitive behavioural therapy (CBT), mindfulness and psychotherapy remain the mainstay of treatment for PTSD.

Public perceptions about MS

Jacqueline du Pré, the celebrated British cellist, tragically died from MS in 1987 at the age of 42. Her death was extensively covered on TV and in the newspapers, and this publicity most likely helped to shape the general public’s view of MS in the late ‘80s and ‘90s: MS was a disease that struck when you were young and invariably caused disability and early death. Back then, most people in the general population knew little about MS. Their perceptions were potentially coloured by advertising such as that from the MS charities, showing young people with MS in wheelchairs – a campaign intended to prompt donations for research.

Fortunately, things have changed and the modern approach to fund raising by MS charities is more positive, thoughtful and sensitive. In addition, most people who turn out to have MS already suspect their diagnosis because they have asked ‘Dr Google’ or their favourite AI large language model. Despite this, many people with MS are traumatised from the diagnosis and subsequently meet the diagnostic criteria for post-traumatic stress disorder (PTSD) specifically related to their MS diagnosis and outlook.

Symptoms of post-traumatic stress

The following symptoms are associated with PTSD.

1. Poor concentration
2. Flashbacks or vivid memories of the trauma as if it was recurring
3. Intrusive thoughts of the traumatic event
4. Avoidance of people and places, to reduce symptoms
5. Nightmares, thoughts or memories of the trauma while asleep
6. Anxiety
7. Panic attacks or racing pulse, excessive sweating, shaking or chills when remembering the trauma
8. Depression
9. Hyper-alertness in situations that remind you of the traumatic event
10. Difficulty sleeping; struggling to get to sleep or to stay asleep
11. Anger as a result of the traumatic experience
12. Anhedonia or loss of enjoyment of things you found pleasurable before the event
13. A feeling of detachment from friends and family, or those closest to you
14. Change in life goals you had before the trauma.

Case study

A patient of mine, now in her late 60s, was diagnosed with MS in the early 1990s. She has benign MS and has done very well. Apart from mild gait unsteadiness, back pain and a weak right leg that causes a slight limp when she is tired, she is fully functional. She was treated with interferon-beta for 14 years; her only ‘MS medication’ currently is a low dose of gabapentin at night, which helps to dull the back pain so that she can get a good night’s sleep.  Despite having a good prognosis, she suffers from PTSD in relation to how her MS was diagnosed all those years ago. The private neurologist she consulted was not an MS expert and he had not prepared her for the diagnosis. During her diagnostic appointment, he simply walked up to a backlight X-ray displaying her MRI scans and announced, with his back to her, that she had a lot of white blobs on her MRI, which confirmed his suspicions that she had MS. He then turned around and said he would 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 walking out of the consultation with a cold panic enveloping her. On catching the tube home, she encountered a poster from an MS charity of a young person leaning forward in a wheelchair, with a zip down their spine. The implication was that damage to the spinal cord from MS had caused the disability. To this day, she gets regular and intrusive flashbacks of these experiences. The flashbacks are associated with feelings of anxiety or panic, palpitations, hyperventilation, hot flushes, sweating and a feeling of doom. They can come on spontaneously, but they typically happen before a hospital appointment and particularly when she has an MRI scan. In fact, MRI is such a problem that she now refuses to have repeat scans. The white blobs have become monsters that she imagines are expanding and suffocating her. Her GP has diagnosed PTSD and prescribed a selective serotonin reuptake inhibitor (SSRI). This helped to reduce the frequency and intensity of the flashbacks. However, it caused weight gain, so she stopped taking it. She has subsequently found cognitive behavioural therapy (CBT) and mindfulness or meditation helpful, though not a cure.

My patient above may be an extreme example, but asking the relevant questions reveals that about one-quarter of people with MS have symptoms of PTSD, and more than one in 20 have a confirmed diagnosis of PTSD. Why, then, are healthcare professionals in general so bad at communicating the diagnosis of MS? What can they do to improve the experience? 

Personal reflection

After sustaining multiple life-threatening injuries in a pedestrian road traffic accident in 2020, I have flashbacks about the accident. These are not intrusive and are typically triggered by crossing the road, approaching a traffic intersection or hearing a motorcycle in the distance. These flashbacks are fleeting and are not associated with any systemic symptoms. I, therefore, suspect flashbacks are a normal phenomenon for people who have just suffered a traumatic experience. However, experiencing them for myself has provided a context and a deeper understanding of how traumatic it can be to be diagnosed with MS or indeed with any chronic disabling disease. 

Management of post-traumatic stress disorder

Neuropsychological interventions such as CBT, mindfulness and psychotherapy remain the mainstay of treatment for PTSD. Some people find that exposure therapy (being reminded of the trauma) helps to reduce the frequency of flashbacks and the severity of anxiety and panic attacks. Exposure therapy is becoming high tech, with immersive virtual reality scenarios.

Medications that can help with PTSD include SSRIs and other classes of antidepressants. Some people find psychedelics helpful, for example psilocybin and MDMA (commonly known as magic mushrooms and ecstasy, respectively); these are being studied in PTSD. Alternative treatments such as yoga and acupuncture may help. Exercise when done regularly is also useful.  

If you have symptoms of PTSD that are troubling you, please seek advice from your healthcare professional. 

Shift.ms

George Pepper, a co-founder of a social network for people with MS, describes his diagnostic experience as very poor, with no support offered to people like him. This prompted him to set up 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. I would highly recommend watching the video.