Case study
I am a 48 years old woman with secondary progressive multiple sclerosis. I was diagnosed 22 years ago and was initially treated with interferon-beta (Rebif) for 12 years but stopped it when I moved back to the UK from Australia. I have not had an obvious relapse since starting Rebif. My last MRI scan before the COVID-19 pandemic did not show any new lesions. My main problems are (1) dragging of my left leg and a left foot drop, which causes me to trip and fall frequently, (2) bladder problems with recurrent urinary tract infections and nocturia, and (3) bowel urgency with intermittent diarrhoea and constipation and several episodes of incontinence per year.
At present, my walking distance is limited to about 30 minutes (1-2 km). My physiotherapist has provided me with a hard foot splint after a failed trial of a functional electrical stimulator (FES), and she now wants me to start using a walking stick. I am trying to avoid it as a walking stick just doesn’t look very cool. I fractured my left wrist during the lockdown as a result of a fall, and more recently, I fell and fractured several ribs.
Is there anything that can be done to help me?
Prof G’s opinion
Yes, a lot can be done to help this patient. Firstly, getting on top of your bladder and bowel problems is important. There is emerging evidence that recurrent infections may speed up disease progression. I suggest you read the following MS-Selfie Newsletters on how to manage your bladder function. If you can’t manage these problems yourself, you need to be referred to a continence service so you can have a formal assessment of your bladder function.
Bladder Self-management
Infection: managing your bladder to prevent recurrent UTIs (29-June-2021)
Help, I am peeing myself at night (21-Aug-2021)
Bowel Self-management
Faecal incontinence (4-Aug-2021)
Intermittent diarrhoea in MS (2-Nov-2021)
I would also suggest you also read my newsletters on anticholinergic drugs and amitriptyline that are frequently used for bladder problems.
Anticholinergics
Your anticholinergic burden (8-July-2021)
Amitriptyline: the neurologist's dirty little secret (29-Sept-2021)
Walking problems
This patient seems to have problems coming to terms with her physical disabilities and probably needs counselling. I suspect that in addition to weakness in her lower limbs, she may have spasticity and poor balance contributing to her falls. The physiotherapist is right in that she does need a walking aid to try and help prevent her from having further falls. I know that a walking stick is stigmatising, but it doesn’t have to be so. I suggest this patient explores the range of walking sticks and chooses one that suits her personality.
I have worked with Arda Sheperd, a Canadian woman with MS who runs a blog called ‘Tripping on Air: My Trip Through Life with MS’. She turned her walking stick into a fashion accessory and lets the stick empower her rather than define her. Please read her blog and watch this short YouTube video to see how she has redefined what it means to have MS.
I know that not everyone with MS can do what Arda has done. If you need help coming to terms with MS, I suggest you seek professional help. You may find a counsellor helpful. I would recommend both CBT (cognitive behavioural therapy) and mindfulness. Another thing is group therapy and speaking to other pwMS in a similar situation to you. There are a lot of MS self-help groups you can join.
To make firm recommendations for this patient, I would need to examine her and have more information. I would be particularly interested to know if she has superimposed spasticity and is on antispasticity medication. Antispasticity agents, such as baclofen, tizanidine, clonazepam, and gabapentin, can lead to the so-called rag-doll effect. By reducing tone in the lower limbs, antispastic agents can make weakness more obvious and increase your chances of falling. We call this the rag-doll effect (please see ‘The rag-doll effect’ - 29-Jan-2022).
This patient also needs a personalised exercise programme that focuses on improving her balance and on falls prevention. You need to realise that as your MS worsens, you often reduce your daily activities, leading to deconditioning, worsening your physical condition, and further progression of your MS. This vicious cycle needs to be broken. If this patient finds physical exercise, such as walking and muscle strengthening exercises, difficult, she may find hydrotherapy or aqua aerobics more helpful. Firstly, you can’t fall in a swimming pool, and the water provides extra resistance. Also, exercising in water reduces a rise in body temperature, and many people with MS find this helps with exercise-induced fatigue and conduction block.
Multitasking
I would be interested to know if this patient has problems with multitasking? As MS progresses and damages the brain and spinal cord, pwMS develop cognitive problems and difficulty multitasking. This is because MS reduces your reserve, and hence you have to concentrate on doing one task at a time.
The study below shows this is not limited to cognition but also affects physical activities. The so-called walking-while-talking task shows how doing a mental task whilst walking causes your walking to deteriorate. I know of several patients who have had falls when taking on a mental task whilst walking. Please be careful if you are at risk of falls and have noticed problems with multitasking; don’t try to do two things at once; the consequences could be a fall and a fractured bone.
Bone Health
This patient needs to have a bone health assessment. As you are aware, pwMS are more likely to have thin bones (osteopaenia and osteoporosis) and, as a result, have a much higher risk of fractures. This patient needs a bone density scan (DEXA scan), and if she is found to be osteopaenic, she will need treatment (vitamin D, calcium, biphsophonates, HRT, etc.). I will do a separate MS-Selfie Newsletter on bone health in the future.
Menopause
I note this patient is 48 years of age, so she may be menopausal. I would ask her about perimenopausal symptoms and advise her on menopause and HRT (Is it MS or is it the menopause? - 16-Aug-2021)
DMTs
As you can see there is no quick fix for someone with secondary progressive MS. This patient needs a lot of attention. I will also offer her a repeat MRI to see if she has acquired new lesions since her last MRI. If yes, she may be eligible for siponimod, which is licensed for active SPMS. Siponimid slows worsening disability and brain volume loss and protects cognition. This patient is 48 years of age and needs as much protecting of her brain as possible to allow her to age as well as possible in the future.
I would be interested to know if any of you noticed problems with multitasking affecting your walking ability and balance?
Paper
Introduction: Multiple Sclerosis (MS) is associated with demyelination of the central nervous system that negatively impacts both motor and cognitive function, resulting in difficulty performing simultaneous motor and cognitive tasks, or dual-tasks. Declines in dual-tasking have been linked with falls in MS; thus, dual-task assessment with the Walking While Talking Test (WWTT) is commonly utilized in the clinical setting. However, the validity and minimal detectable change (MDC) of the WWTT has not been established for persons with MS. The primary objective of the study was to establish the WWTT as a valid measure of dual-task function by examining concurrent validity with other motor, cognitive and dual-task measures, and to establish the MDC for both the simple and complex conditions of the WWTT.
Methods: In a single visit, 38 adults (34 female, mean (SD) age 49.8(±9.1), Patient Determined Disease Steps (PDDS) mean 3, range 1-6) completed the WWTT simple (walk while reciting the alphabet) and complex (walk while reciting every other letter of the alphabet) conditions as well as a battery of cognitive and motor tests. Spearman correlations were used to examine concurrent validity. The sample was divided into low and high disability groups to determine the impact of disability severity on relationships among WWTT and cognitive and motor function.
Results: Excellent concurrent validity (r ≥ 0.79; p < 0.001) was observed for the WWTT simple and complex with both motor (Timed Up-and-Go, Timed 25-Foot Walk, forward and backward walking velocity, Six-Spot Step Test) and dual-task measures (Timed Up-and-Go Cognitive). The WWTT-simple demonstrated moderate concurrent validity with measures of processing speed (Symbol Digit Modalities Test, p = 0.041) and was related to all motor and dual-task measures across disability levels. The WWTT complex was only related to complex motor tasks in the low disability group. Within the low disability group, WWTT was associated with processing speed (p = 0.045) and working memory (California Verbal Learning Test, p = 0.012). The MDC values were established for WWTT simple (6.9 s) and complex (8 s) conditions.
Discussion: The WWTT is a quick, easy-to-administer clinical measure that captures both motor and cognitive aspects of performance for persons with MS. Clinicians should consider adding the WWTT to the evaluation of persons with MS to examine dual-task performance.
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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 Barts and The London School of Medicine and Dentistry or Barts Health NHS Trust. The advice is intended as general advice 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.
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