How common is post-traumatic stress disorder in people with MS?

People with MS are often 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.

I have 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 well 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 a small dose of gabapentin at night, which helps dull the back or myelopathic pain so she can get a good nights sleep. 

Photo by Stormseeker on Unsplash

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 the disease. 

Jacqueline du Pré died in 1987, just before my patient had developed MS, and as her death had been extensively covered on TV and in the newspapers, my patient thought the same thing was going to happen to her. 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. Clearly, 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 and intrusive flashbacks of these experiences. 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. 

After sustaining multiple life-threatening injuries in a pedestrian road traffic accident last year I have flashbacks about the accident. These are not intrusive and are typically triggered by crossing the road,  when I approach a 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 you a pwMS about this syndrome a quarter of them have symptoms of PTSD and more than 1 in 20 have a confirmed diagnosis of PTSD. This is a lot more common than you realise. The question I ask is why are HCPs, in general, 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, a social network for pwMS, 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.

The following are a list of symptoms associated with PTSD, which you may recognise in yourself.

1. Poor concentration

2. Flashbacks or vivid memories of the trauma as if it was reoccurring

3. Intrusive thoughts of the traumatic event

4. Avoidance of people and places to reduce symptoms

5. Nightmares or thoughts or memories of the trauma have come to me while asleep

6. Anxiety

7. Panic attacks or racing pulse, excessive sweating, shaking, or chills when remembering the trauma

8. Depression

9. Hyperalertness in situations that remind of the traumatic event

10. Difficulty sleeping - you struggle to get to sleep, or to stay asleep

11. Anger as a result of 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

Neuropsychological interventions, such as CBT, mindfulness and psychotherapy remain the mainstay of treatment. Some people find exposure therapy when they are reminded of the trauma helps reduce the frequency of the flashbacks and severity of the anxiety and panic attacks. Exposure therapy is becoming high tech with virtual reality exposures. Medications that can help with PTSD include SSRIs (selective serotonin reuptake inhibitors) and other classes of antidepressants.  Some people find psychedelics (psilocybin, MDMA, etc.) helpful and these are being studied in PTSD. Alternative treatments such as yoga and acupuncture may help. Exercise when done regularly is also useful.  

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? If you have symptoms of PTSD and they are troubling you please seek advice from your HCP. 

Subscriptions

I am raising funds from subscriptions to administer the MS-Selfie Newsletter and microsite. The subscriptions, for case studies only, will be used to hire an administrator to proofread, curate and transfer the contents of the Newsletter onto the companion MS-Selfie microsite. If you find these Newsletters helpful and can afford to subscribe I would urge you to do so; it will help me and the MS community.

The case study from the 3rd of September is about a patient on ocrelizumab who hasn’t mounted an antibody response to the COVID-19 vaccine and how she wants to switch to dimethyl fumarate to improve her response to the booster dose of the vaccine. In the Newsletter, I discuss the science behind vaccine responses and give her practical advice about how to switch and the timing of the vaccine.

MS-Selfie

Conflicts of Interest

Twitter

LinkedIn

Medium

General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as generic advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.