By recognising the signs of PTSD with an MS diagnosis and delivering the appropriate support, patients are empowered to focus on improving their quality of life, says Dr Roy Aloni, head of Psychological Unit, Multiple Sclerosis Center, Sheba Medical Center, and BelongMs expert
Multiple sclerosis (MS) is an autoimmune disease of the central nervous system that affects both the brain and the spinal cord. With MS, the immune system attacks myelin—a protective layer that covers the nerve fibres— allowing the degeneration of groups of neurons, which affects a variety of functions.
In most cases, MS is diagnosed at a young age, which can be a significant emotional burden with extensive psycho-social consequences that affect the patient’s quality of life.
Beyond the multitude of physical symptoms and challenges MS presents, the impact of the disease on a patient’s mental health cannot be ignored. Diagnosis and living with the disease can be as traumatic as the mental scars more traditionally associated with war, terrorism and crisis.
Most of the scientific literature about the emotional effects of MS focuses on anxiety and depression, hardly addressing coping with the traumatic aspects of the disease.
In the last few years, limited research has finally begun to explore Post-Traumatic Stress Disorder (PTSD) associated with MS.
PTSD is defined as a mental health condition that is triggered by a terrifying event—either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event, and internal and external avoidance from cues that relate to the event.
It is becoming apparent that PTSD is not only a consequence of MS but can actually exacerbate the condition. There is a growing body of evidence showing that stress may influence the immune function via the autonomic nervous system and the hypothalamus-pituitary adrenal axis.
Simply put, this suggests a worrying cycle where the diagnosis and treatment of MS can trigger PTSD, which in turn can make the physical aspects of the condition even worse.
As a result of my clinical work and my facilitation on the BelongMS app, moderating a group created specifically to guide MS patients struggling with PTSD and other psychological matters, I have witnessed how much critical information and mental support patients require on this issue.
PTSD in MS Patients
According to the standard classification of mental disorders, a person who experiences a threat to their physical integrity may develop post-traumatic symptoms reflected in four clusters – avoidance, hyperarousal, intrusion and alternation in mood and cognitions.
With MS, distress is more complex and intense due to the chronic nature of the disease. In most cases this is characterised by a pattern of “relapsing–remitting,” where the symptoms become worse over time (relapsing), followed by periods of less severe symptoms that do not completely cease (remitting). This pattern can make people feel helpless and incapable of controlling or planning their future, leaving them constantly anxious about what’s coming next.
Let’s take a deeper look at the four clusters of PTSD and their expression in people with MS:
- Avoidance: Symptoms of avoidance include avoiding internal and external stimuli related to the disease, such as thoughts about the disease and its consequences. Avoidance also includes re-experiencing involuntary memories and episodes of the diagnosis, or a previous relapse in an uncontrolled manner. It can also result in the patient avoiding taking their medications, or shunning places that remind them of abrasive experiences with MS.
- Hyperarousal: Hyperarousal occurs when a person’s body suddenly kicks into high alert as a result of thinking about their trauma. Even though real danger may not be present, their body acts as if it is, causing lasting stress after a traumatic event. This includes symptoms such as irritability or aggressive behaviour, self-destructive behaviours, or risk-taking.
- Intrusion: People who experience intrusive symptoms describe it as though they are right back there, reliving (re-experiencing) their trauma all over again. They are unwanted, and therefore, involuntary. Intrusion involves having nightmares about the disease (for example, dreaming about being in a wheelchair), a memory (like the day the person was diagnosed), or flashbacks to a difficult time in their journey.
- Alternation: Alternation includes symptoms related to emotional and cognitive changes, such as a negative mood, difficulty experiencing positive emotions, negative beliefs and expectations towards the world. It can also include self-blame or blaming others.
Managing MS-Related PTSD
With proper acknowledgment of the emotional complexity of dealing with MS, we can increase the patient’s involvement in, and adherence to, their treatment regimen and the development of their coping strategies. This can improve the management of their disease and significantly improve their quality of life.
PTSD has the ability to influence a person’s psyche, which can ultimately manifest into traumatic dynamics. A psychological assessment can help tailor appropriate therapies such as Prolonged Exposure (PE), Eye Movement Desensitisation and Reprocessing (EMDR) or Cognitive Processing Therapy (CPT) that can considerably alleviate symptoms.
For example, a specific type of cognitive behavioural therapy, PE, which is a strong evidence-based treatment, teaches individuals to gradually approach their trauma-related memories, feelings and situations via imaginal exposure and in-vivo exposure.
They presumably learn that trauma-related memories and cues are not dangerous and do not need to be avoided. Most people want to avoid anything that reminds them of the trauma they experienced but doing so reinforces their fear.
By facing what has been avoided, a person can decrease symptoms of PTSD by actively learning that the trauma-related memories and cues are not dangerous and do not need to be avoided – in other words, habituation.
The Future of PTSD Management in MS Patients
PTSD directed treatments such as PE are presently uncommon in the treatment of MS patients – this needs to change as we build awareness of the relationship between MS and PTSD.
Currently, there are a limited number of scientific papers on PTSD in MS patients. We need to build academic knowledge and understanding of the traumatic aspects of living with MS so that it becomes more available in the treatment of patients.
As MS is a chronic, degenerative disease, patients live with the fear of their next MS attack and the great uncertainty that goes with it. MS needs to be recognised as ongoing stress with the vulnerability of developing PTSD symptoms.
By proactively recognising and managing PTSD symptoms in MS patients, we can interrupt the stressful cycle of anxiety, coupled with its impact on the immune system to deal with flare-ups. By dealing with the effects on a patient’s health—specifically the trauma-related stress—we can help patients better manage their MS and improve their quality of life.
Dr Roy Aloni is a rehabilitation psychologist focused on treatment for adults and young patients with chronic medical conditions. Head of the Multiple Sclerosis Psychology Center at Sheba Medical Center. Dr Aloni offers his expertise on Belong.Life’s BelongMS app, moderating a group to guide MS patients struggling with PTSD or other psychological issues.
“I found out I was pregnant shortly after my MS diagnosis”
It has been a whirlwind last few years for MS patient Annie, whose diagnosis, sparked from getting a fly stuck in her eye, came just weeks before her first pregnancy.
A Multiple Sclerosis (MS) diagnosis is often a life changing event, with huge worries and concerns being overriding emotions for those who are told they have the condition.
This was exactly the case for 30-year-old Annie, who found out she had MS just weeks before she discovered she was pregnant with her first child.
For years she had been suffering with fatigue and tiredness, but despite spending hours doing her own research she could not work out what was causing it.
After numerous hospital visits, she was given a diagnosis of chronic fatigue syndrome, although Annie said she ‘never really felt like that was the correct diagnosis’ for her.
It would take a strange coincidence for her to eventually discover the problem, after she got a fly stuck in her eye in June 2020.
She experiences blurred vision for a few days following this, which led her to visit the options who referred her to John Radcliffe Hospital (JR) in Oxford.
An MRI scan was taken with doctors finally unveiling the MS, giving her the diagnosis a day later.
This would be a lot to take for most people, but Annie had an extra layer added to this shortly afterwards when she found out she was pregnant.
This led her to be concerned about what affect her diagnosis would have on her child.
“I did quite a bit of research myself and I spoke to my midwife,” she said. “I was also under care at the JR called Silver Star, which is for people with a high-risk pregnancy.
“I asked a lot of questions just really regarding my baby and if it would affect her in any way and I was reassured that there’s really a minimal chance that it can be passed on.
“That was my main concern but I also looked at if I would get more symptoms, but it seemed from the research and speaking to people that actually MS symptoms seem to stop when you’re pregnant because of your hormones.
“So I actually really enjoyed it, I had quite a nice pregnancy.”
Thankfully there were no issues during her pregnancy and she gave birth to a healthy baby girl named Aubrey in April.
However for this reason she did not want to start any form of treatment until after this and was worried that symptoms would start soon after.
Annie admitted her diagnosis was a shock as she did not know much about MS nor did she know anyone who had it.
However she was determined to not let it change anything.
“When I found out initially, that day was quite shocking,” Annie said. “But I’m quite a practical person so I just got on with it, that was where I was at.
“Since I’d had this for years and it’s not changed who I am or affected me massively, it’s just a thing I have.
“I didn’t want it to define who I was or be an excuse for not doing things. In the future it might be more of an issue and hold me back a little bit more, but at the moment it’s just one of those things that I can’t change.
“I’ve got so I might as well just live with it. I’ve told my close friends and family about my diagnosis, but I don’t feel like the world needs to know.”
Annie’s positive outlook is what has allowed her to continue her life to live her life and she has certainly not let it stop her doing anything.
She was midway through her Masters degree when she was given her diagnosis, but she managed to finish that and continues to work full-time as a human resources advisor.
This was challenging for her when it came to things like long periods of concentration or trying to view data, but as mentioned previously Annie never wanted MS to be an excuse for anything.
Currently she says she has not had many issues with the condition, saying the tiredness felt by many is something she is used to now.
However she has been receiving help from the MS Trust, which was her first destination when she wanted to learn more about it.
“I went to the MS Trust and the MS Society’s websites because that was the most reliable information.
“When I was first diagnosed I didn’t know anyone with MS so it was a good place to start some research and actually understand what it was and how it could affect me.
“After a diagnosis you might go online and look at a website that’s not hugely reliable and it’s always the worst case scenario that you read about.
“But things like its forums and having people that are actually going through the same stuff, it was good to look at.”
Looking to the future Annie says she would love to eventually give back to the MS Trust, suggesting she could attempt to climb Mount Kilimanjaro in a fundraising effort.
At the moment however she is just looking to live life normally.
Having just turned two months, Aubrey is healthy and has had no issues impacting her from her mother’s MS.
Annie confessed looking after her daughter keeps her busy but she wouldn’t have had it any other way.
Pioneering MS research supported with £1.2m in grants
Pioneering new multiple sclerosis (MS) research projects – including three in the UK – have been awarded £1.2million as part of a renewed global effort to stop the condition.
The International Progressive MS Alliance will share the funds – up to £65,000 each – between researchers around the world through 19 Research Challenge Awards.
Each winning project shares a united goal of discovering what causes MS to progress.
By developing a clear understanding of what leads to MS progression, it is hoped this funding will speed up the development of much-needed new treatments for the condition.
Professor David Baker, from Queen Mary University of London, is one of three UK researchers who has been awarded funding.
His innovative project will explore how to protect nerve cells from becoming dangerously over-excited. Over-excited nerve cells can die, and nerve cell death plays a big part in MS progression.
Professor Baker explains: “We’ve developed a chemical that we believe can help calm over-excited cells and protect them from exhaustion.
“Based on a chemical our bodies make naturally, it can enhance a gate-like mechanism, which allows certain charged particles to exit the nerve cell. This prevents the build-up of excitability which can be dangerous, and lead to nerve cell death.
“If we can use our new chemical to control this function without affecting other cellular processes – therefore causing negative side-effects – and protect nerve cells from death in the process, it could be a complete game changer for MS treatment.”
Dr Don Mahad, based in Edinburgh, will also be awarded funding from the Alliance. Last year he and his team discovered that the diabetes drug pioglitazone could be another piece in the puzzle of stopping MS, through its ability to protect nerves from damage.
Their work, which so far has only been conducted in mice, can now be taken forward in experiments with human tissue.
“To stop MS from progressing, we need to be able to protect nerves from damage,” says Dr Mahad, senior clinical lecturer at the University of Edinburgh.
“Last year we found that our nerves have a natural protective response when myelin, the coating that protects them, gets damaged in MS. And in animal studies we were able to enhance that response with a drug that’s already available.
“We’re now able to take our findings forward to see if what we’ve found in mice is also true in brain tissue from people with MS. We also want to find out if nerve cells have other natural protective responses, and how we might help these processes along.”
At University College London (UCL), Professor Ken Smith will explore when the fatal injury that leads to nerve cell death in progressive MS happens.
His team will explore whether targeting oxygen shortage in the inflamed nervous system affects the subsequent accumulation of disability.
In addition to three UK projects, scientists in the USA, Italy, Australia, Finland, Germany, Netherlands, Canada, Belgium, Austria, Switzerland, Ireland and France will also be awarded funding.
Among some of the most exciting international projects are Professor Francesco Bifari’s work in Italy, which will test whether particular nutritional supplements in mouse models of progressive MS can increase cellular energy and mitochondria function in nerve and immune cells.
And in Germany, Professor Ludovico Cantuti-Castelvetri will be exploring whether a new antibody can help to clear damaged myelin out of the brain, and in turn slow brain damage.
Professor Alan Thompson, chair of the Alliance Scientific Steering Committee, says: “These awards represent an important advancement in progressive MS research and will build upon prior investments by the Alliance.
“We are greatly encouraged by the high quality and diversity of the funded projects. Successful results from these studies will greatly accelerate the development of new treatments for people with progressive MS.”
Dr Clare Walton, Head of Research at the MS Society – a funding Alliance member – adds: “We believe we can stop MS. And by finding out what drives MS progression, these projects will bring us one step closer to finding treatments for everyone.”
‘Effective MS treatments should be available for everyone with MS, wherever they live in the UK’
A medication for people with relapsing MS has been denied recommendation for NHS use England and Wales, despite it gaining approval from Scottish regulators earlier this year.
Ozanimod, or Zeposia, is a disease modifying therapy which is taken as a tablet and traps immune T-cells in the body’s lymph nodes.
In a two-year clinical trial, it was shown to reduce relapses in those with active relapsing remitting MS by around 38 per cent, compared to beta interferon, an existing MS treatment.
However, the National Institute for Health and Care Excellence (NICE) has decided not to recommend it for people with relapsing MS on the NHS in England and Wales, confirming its provisional decision from January – despite the fact it was given approval by the Scottish Medicines Consortium (SMC).
Following a final review of evidence, including that from charities, NICE found that ozanimod was not cost effective enough to be recommended for use on the NHS. NICE considered that ozanimod’s effect on disability progression was uncertain.
MS charities have spoken of their disappointment at the decision, particularly given its approval for use in Scotland.
“It’s disappointing that NICE has made this final decision not to recommend ozanimod as a treatment for relapsing multiple sclerosis in England,” says Fredi Cavander-Attwood, policy manager at the MS Society.
“Oral treatments, like ozanimod, are limited and not allowing people this option could deny them a convenient way to manage MS symptoms.
“This rejection also highlights the inequities in access to treatments around the UK, as people living with MS in Scotland were granted access to ozanimod in February.
“Effective MS treatments should be made available for everyone living with MS, regardless of where they live in the UK.”
In March 2020, ozanimod was licensed by the European Medicines Agency (EMA) to treat people with relapsing MS who have active disease.
Scotland is now the only nation in the UK to approve ozanimod, with 15 disease modifying therapies now available on the NHS in the country. The NICE decision applies to England and Wales, with decisions from the body reviewed by the government in Northern Ireland but are generally adopted.
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