Q&A 25 - how can MS self-management improve MS outcomes?

She is demonstrating a virtuous cycle of improvement. This is an example of how sorting out one debilitating MS-related problem, bladder dysfunction, can have positive effects on multiple symptoms.

I was asked to write an article on how MS self-management and, by inference, MS-Selfie can transform MS management. The best way to illustrate this is using a real-life example and an MS-Selfie counterfactual.

counterfactual

/ˌkaʊntəˈfaktʃʊəl/

PHILOSOPHY

adjective

• relating to or expressing what has not happened or is not the case.

noun

• a counterfactual conditional statement (e.g. If we prevent someone from developing multiple sclerosis, they would not develop MS-related bladder dysfunction).

A real-life case study 

I am a 56-year-old woman with secondary progressive multiple sclerosis. I now have to use a wheelchair, the one thing I was hoping to avoid as I live alone. I got divorced 15 years ago, and my children have left home. I have only just been able to return home after spending the last 10 weeks in rehabilitation. When I was transferred from the hospital to the rehabilitation centre, I expected to walk again. Sadly not, I now have to readjust to a different life with a new set of expetcations as a person unable to walk. 

The delay in being discharged was because the therapists classified me as an ‘unsafe discharge’. After a home visit with them, we had to get social services to coordinate several changes to my house. This came at great personal expense. I now have wheelchair-accessible ramps at the front and back of the house, a through-floor lift and a wet room conversion to my en-suite bathroom. I also have a care package, with carers coming in twice daily. In the morning to get me up and ready for the day and again in the evening to help me get into bed. My kitchen must also be adapted to allow me to cook and prepare meals from a wheelchair. I will have all the work surfaces lowered. In the interim I am eating microwaved meals. I have had to get a community alarm in case I fall or have an accident during the day. 

My deterioration started with a simple urinary tract infection or UTI. I noticed a slight burning sensation when weeing on a Thursday morning and contacted my GP to tell them I had a probable UTI. They asked me to drop off a urine sample for testing, which I dutifully did. When I contacted them the next day, on Friday, they told me that the urine specimen showed I had a UTI, and it had been sent to the laboratory for culture and sensitivity. The GP was reluctant to start an antibiotic without knowing what organism was causing the UTI and what antibiotic it was sensitive to. This was driven by the observation that I had been having recurrent UTIs, and he was worried that the organism causing the infections was resistant to the usual antibiotics. I was told to contact the practice on Monday morning for an update and to call the NHS hotline if I ran into problems over the weekend. 

My condition worsened over the weekend. When I woke in the early hours of Sunday morning, I had a very high temperature, was shaking and could not move. I have subsequently been told this was likely a pseudorelapse due to the infection and a high temperature. I waited until 6 am when I called and woke my daughter, who came immediately. She found me in bed, confused and limp with cold hands and feet. She called for an ambulance, and I was blue-lighted to the local hospital.  I ended up in ITU for ten days with septicaemia. It was touch and go, and the doctors in ITU warned my family that I may not pull through. As a result of my septicaemia, I went into renal failure and developed lung complications with superimposed pneumonia. I survived. 

I then spent over six weeks in the general medical ward, hoping to make a full recovery. It soon became apparent that UTI and septicaemia had done something to the surviving, and just coping, nerve fibres in my damaged spinal cord and that, as a result of the infection, my recovery would be slow. The neurologist who saw me on the ward said I would eventually get back to my baseline. This hasn’t happened, and it has been over three months since my admission to ITU. I saw the therapists 3 or 4 times a week for about 30-40 minutes during my hospital stay. They did what they could during their visits. Sadly, the limited exercise I managed during these sessions aas insufficient to strengthen my legs to support my body weight and to start walking again. Because I was unsafe to go home, I had to wait weeks for a place in the local rehabilitation unit. 

During my hospital stay, I was found to be retaining urine, which is the reason why I was getting recurrent UTIs. The continence nurse told me it was important to empty my bladder as the residual urine left behind allowed the bacteria to colonise the bladder and cause recurrent infections. I now have to self-catheterise myself at least twice a day, and I am taking a daily dose of an antibiotic to prevent any further infections. I have also been started on solifenacin to help relax the bladder and help with urinary frequency and urgency. I must tell you that now that I am in a wheelchair, getting to the toilet in a hurry is never easy, and as a backup, I have started to use continence pads. Sometimes, these pads are not enough, and I leak. I find smelling of urine very embarrassing, and it makes me feel dirty. I am now seriously considering taking up the offer of having a suprapubic catheter inserted. I am also having a problem sleeping at night and frequently wake up to pass urine three to four times a night and sometimes more than this. Fortunately, I have been able to buy a commode and don’t have to try to get to the bathroom at night. I wouldn’t say I like solifenacin as it has made me constipated and causes a severe dry mouth. I am sure it is having other effects on my functioning. 

I am in a very sorry state, and I am convinced that if it were not for my recurrent urinary tract infections and septicaemia, I would still be walking and living independently. What do you think?  

Photo by Stefano Intintoli on Unsplash

An MS-Selfie counterfactual case study 

I am a 56-year-old woman with secondary progressive multiple sclerosis. Thank you for helping to improve my bladder function, which has enormously impacted my quality of life. 

Until 6 months ago, I was having UTIs almost every month. However, after reading your MS-Selfie Newsletters on bladder self-management and seeing the continence service, my life has been transformed. My post-micturition bladder scan showed I had a raised residual volume of 140mL; as a result, I now self-catheterise myself four or five times a day. I have also started Mirabegron, which was only partially effective. Since I combined it with Trospium, my symptoms have improved further. This helped, but the real game-changer was starting Botox injections into the detrusor muscle of my bladder. I now have no urinary urgency or frequency and no episodes of incontinence. Miraculously, I have been cured of the latch-key syndrome. I am still waking once or twice at night to pass urine. 

After reading your MS-Seflie on DDAVP, my GP has agreed to give me a trial of Desmotabs at night. I am due to collect the tablets from the pharmacy later today. However, even only waking up once at night to catheterise has improved my sleep, and I now feel so much more awake in the morning. The knock-on effect on my daytime functioning has been amazing. I now have enough energy for my pilates classes and stick religiously to doing my pelvic floor exercises using the NSH squeezy app. I also enjoy going out to see friends and family. The real change for me has been being free of bladder infections. I now take a daily urinary antiseptic called nitrofurantoin, and I dipstick my urine twice a week. My GP practice has been amazing and now allows me to drop off a urine specimen for laboratory analysis whenever the dipstick shows I have an early infection. I also have the option of starting a course of antibiotics as soon as I detect a bladder infection and changing the antibiotics if the laboratory results show the organism is not sensitive to the antibiotic I started.

My mobility has improved because I am on top of my bladder problems. I can now walk anything between 200 and 500m. Six months ago, I was battling to walk 50m. Not being so tired and socialising more have improved my mood. I have rejoined my old book club—yes, I have the energy to read—and I have planned to go out to dinner with an old friend next week. Six months ago, none of these things would have been possible. 

It is amazing how understanding MS-related bladder dysfunction, taking control of my bladder problems with a responsive continence service and my GP, can have such an impact on someone living with MS. If it wasn’t for reading about this on MS-Selfie I may be in a very different place. 

Prof G’s opinion

As someone who has worked in the field of MS for over thirty years, I have seen many cases that represent both of these scenarios. Some of you may recognise components of your MS experience in these real-life and counterfactual case studies. I aim to make the counterfactual case study the reality across the spectrum of MS-related problems. I am convinced that holistic MS self-management in the context of a responsive healthcare system and a marginal gains approach to MS management is what will drive efficiency gains of the magnitude our Chancellor of the Exchequer wants (please see ‘How do we make MS services more efficient?’, 11-Mar-2024). Do you agree? 

The real case study raises several potential questions:

• Why did this person become paralysed during their acute infection?

• Why did this pwMS not make a recovery after her UTI and episode of septicaemia?

• Why will a suprapubic catheter help this patient?

• What are the off-target effects of solifenacin?

The MS-selfie counterfactual also raises questions:

• Why is the combination of Mirabegron and Trospium better than monotherapy?

• Why Trospium and not Solefenacin?

• How do Botox injections into the detrusor muscle work?

• How easy is it to interpret a urine dipstick test?

• Why has this patient’s fatigue improved? 

• Why has this patient’s exercise tolerance improved? 

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Answers