MS and uncertainty: how big is the problem?
Are you affected by uncertainty? How bad is it? Can it be treated?
One of my favourite medical maxims is ‘time is often the best diagnostician’. Some of you would point out that this position is not compatible with my position on treating MS, i.e. ‘time is brain’. I agree, but one of the most important tasks I have as a neurologist is to make the correct diagnosis. To err diagnostically is one of the biggest mistakes we can make as clinicians. Did you know that 1 in 20 of you who are diagnosed as having MS don’t have MS? This figure may be an underestimate and may get worse as we liberalise the diagnostic criteria to include more people with ‘early MS’ or asymptomatic disease. For more information on MS misdiagnosis, please see ‘Am I sure that I have MS?’ (9-Jul-2021).
The consequences of a misdiagnosis can be catastrophic, as some of the treatments we use for multiple sclerosis can have life-threatening side effects. But more important than that, being labelled as having multiple sclerosis is life-changing. Having MS is not only stigmatising, but it has consequences way beyond the here and now. Having MS affects life choices, for example, careers, life partners, and decisions about starting or extending a family, to name but a few.
Many pwMS choose not to pursue specific careers because if they become disabled, they will not be able to work. A young orthopaedic surgeon with MS decided to retrain as a general practitioner after a relapse affected his eye-hand coordination; he realised that he was not going to be able to operate safely. A young science graduate decided against a PhD and instead trained as a science teacher. She was concerned about the impact MS was having on her cognition. I can give you many more examples, including PwMS, professional musicians, artists, sportsmen and sportswomen.
For singles with MS, what do you tell the person you are dating? Do you tell them you have MS on the first date, or do you wait? If you wait too long before telling your partner you have MS, does it compromise the trust they have in you? I have one patient who never told their partner they had MS until after they got married. Not unexpectedly, the couple are now divorced, and the patient is living alone and is significantly disabled. She is also socially isolated and very lonely. This reminds me that I need to call her over the Christmas period to see how she is doing.
Many people with MS decide not to start or extend their families. They are often concerned about being too disabled to look after their children or not being able to work and support their families financially. Many pwMS find once they have MS, it is difficult to get life insurance and raise a mortgage for their homes. This is unsurprising, considering that 50% of pwMS are unemployed 10 years after diagnosis. Please note that this figure is about 10 years old, and with new treatment strategies such as flipping the pyramid, employment rates should improve. The economic impact of MS can be catastrophic, particularly in countries that don’t have social safety nets. I saw this when I visited India about a decade ago. One extended family had to raise money every week to pay for interferon-beta for their family member who had recently been diagnosed with MS. They were purchasing Avonex injections one syringe at a time. This case is one of the main reasons I generated an off-label essential DMT list so that pwMS living in low-income environments could at least have their MS treated at affordable prices.
My patients often ask me what will happen to me in the future. It is impossible to predict for individuals, but on the group level, the prognosis of MS has improved dramatically. Despite this, there will always be uncertainty, and some pwMS don’t deal with uncertainty very well. Uncertainty about the prognosis of MS is associated with symptom severity, anxiety, depression, and low quality of life.
Uncertainty significantly affects the outcomes of pwMS in various ways:
Psychological impacts:
Anxiety and depression: The unpredictable nature of MS and the uncertainty surrounding its progression can lead to significant anxiety and depression. People may constantly worry about future relapses, worsening symptoms, and loss of function.
Quality of life: Uncertainty can limit a person's ability to plan for the future, make life choices, and engage in activities they enjoy, leading to a lower overall quality of life.
Coping: Uncertainty can make it challenging to develop effective coping strategies, as individuals may feel a lack of control over their condition and future.
Behavioural Impacts:
Treatment adherence: Uncertainty about the effectiveness of treatments or potential side effects may lead to reduced adherence to medication or therapy regimens.
Healthcare utilisation: Individuals experiencing high levels of uncertainty may utilise healthcare services more frequently, seeking reassurance or information about their condition.
Avoidance: Some individuals may avoid thinking about or dealing with their MS, leading to delays in seeking care or making necessary lifestyle adjustments.
Physical Impacts:
Symptom severity: Studies have suggested a link between uncertainty and increased symptom severity, possibly due to heightened stress and anxiety.
Recovery from relapses: The psychological burden of uncertainty may negatively impact the recovery process following an MS relapse.
It's important to note that not everyone experiences uncertainty similarly. Individual responses to uncertainty vary greatly. Some people may be more tolerant of uncertainty, while others find it highly distressing. Effective management strategies exist; healthcare professionals can help individuals with MS manage uncertainty through education, support, and coping strategies. If you or someone you know is struggling with the uncertainty of MS, it is crucial to seek professional help. Remember, you are not alone. With psychological support and the implementation of coping mechanisms, there is no reason why you can’t live a full and meaningful life with MS, even in the face of uncertainty.
The study by Sabin and colleagues below shows that a refined 12-item uncertainty scale from the Mishel-Uncertainty of Illness Scale (MUIS) can document this issue in people with early relapsing MS. I have discussed this study before; please see ‘Uncertainty associated with MS: are you comfortable with it? (20-April-2024) and would now like to take this forward by doing a short survey of MS-Selfie readers with MS to see if this is a problem for you. The survey will take about 3-4 minutes to complete.
In addition to this, I would be interested to hear if any of you have been incapacitated by MS-related uncertainty in the past or present and how you have coped. What treatment have you had for it, and whether the treatment(s) have helped?
Some advice on how to cope with uncertainty
1. Acknowledge and validate your feelings: It's okay not to be OK. Recognise that uncertainty is a natural part of living with a chronic illness. Don't suppress your feelings of anxiety, fear, or frustration. Allow yourself to feel them, but don't let them control you. Talk about uncertainty. Share your feelings with someone you trust—a friend, family member, therapist, or support group. Sometimes, just expressing your emotions can make a big difference.
2. Focus on what you can control: Stick to your prescribed treatment plan, whether medication, therapy, or lifestyle changes. This can provide a sense of stability and control. Try to prioritise healthy lifestyle choices, such as regular exercise, a balanced diet, and sufficient sleep. These can help manage symptoms and improve overall well-being. Practice stress-reducing techniques like mindfulness, meditation, deep breathing exercises, or yoga. Set realistic goals. Break down larger goals into smaller, more manageable steps. Don’t forget to celebrate your achievements along the way.
3. Seek information and support by educating yourself: Learn as much as possible about your condition from reliable sources. Understanding your illness can help reduce fear and empower you to make informed decisions. Connect with others. Joining a support group or online community can help you know what you're going through. Sharing experiences and coping strategies can be incredibly helpful. Consider seeking professional help from a therapist or counsellor specialising in chronic illnesses such as MS. They can provide coping strategies and support in navigating the emotional challenges of uncertainty.
4. Mindset shifts: Try and focus on the present. Try not to dwell on the "what ifs" of the future. Mindfulness techniques can help you stay grounded in the present moment. Acceptance is not about giving up, but accepting the uncertainty of your condition can be liberating. It allows you to focus your energy on living your life to the fullest. Try to find meaning and purpose by exploring new hobbies, interests, or volunteer opportunities. Finding purpose and meaning beyond your illness can provide direction and fulfilment. Many of my patients have found meaning by becoming patient advocates; this is not for everyone, but it can help
5. Work with your MS team: Be honest with your doctors about your fears and concerns. They can provide reassurance, answer your questions, and adjust your treatment. Managing uncertainty needs to be collaborative. Work with your MS team to develop a plan that addresses your physical and emotional needs. Remember, everyone copes with uncertainty differently. Be patient with yourself.
Thank you
Postscript
I hope this newsletter explains why a rushed MS diagnosis is sometimes not in a person’s best interest. When diagnostic certainty is low, most neurologists prefer to wait for the disease to declare itself. This is why watchful waiting is a necessary clinical tool.
Paper
A multicenter study involving 204 adults with relapsing-remitting multiple sclerosis (RRMS) assessed the dimensionality and item characteristics of the Mishel-Uncertainty of Illness Scale (MUIS), a generic self-assessment tool. Mokken analysis identified two dimensions in the MUIS with an appropriate item and overall scale scalability after excluding nonclassifiable items. A refined 12-item MUIS, employing a grade response model, effectively discriminated uncertainty levels among RRMS patients (likelihood ratio test p-value = .03). These findings suggest the potential value of the 12-item MUIS as a reliable measure for assessing uncertainty associated with the course of illness in RRMS.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
I’d suggest that it’s the certainty (rather than the uncertainty) that is more concerning to MSers. The certainty that you will never be ‘well’ again. The certainty that you will becoming increasingly disabled - MS is (for certain) a progressive neurodegenerative disease (see EDSS). The certainty that, on average, MS reduces life expectancy (according to researchers) by c.7-10 years, so an MSer can be pretty certain that they won’t be getting a 100th birthday card from the King.
The treatment for MSer certainty / uncertainty is pretty obvious - treatments to stop the worsening disability. This would allow MSers to be able to plan for the future. I would hope that in the next decade we’ll have treatments which will really impact the insidious smouldering causing worsening disability.
When I first had symptoms of MS I was paranoid and it was probably worse than the physical symptoms. I was still training to be a dancer and would test myself several times a day to see if I could still walk on my heals and balance on one leg.
This only stopped when my MS got loads worse, I got work touring as a disabled dancer and had the best time of my life. It made me realise that success and happiness isn’t solely about mobility. I no longer worry about what happens next because I know I will cope.