Will MS-Connect remain a fantasy?

What will the future of MS care look like?

I am fuming; I found out that Naomi, my younger sister who also has MS, is regularly communicating with her MS team via a new web and smartphone application called MS-Connect. She has been using the app to manage her MS for months. My neurologist and MS nurse have never heard of MS-Connect.

Why don’t people and HCPs specialising in MS share best practice?

MS-Connect is so beautifully designed and easy to use, but to my horror, none of the HCPs from my MS Centre are registered on the App. Like other Apps MS-Connect allowed me to register with my Google profile and asked me permission to use data from my diary, activity app, sleep and diet Apps. It only took me 15 minutes to complete my MS profile, which included the usual questions of when I first developed symptoms, got diagnosed and treated. It asked me if I wanted to complete my relapse history, but I tagged the box to remind me later.

I quickly completed a short list of questions about the remainder of my medical history and listed all my current medications. The App then asked me if I minded completing a baseline assessment to stage my MS. I had to complete a short online EDSS questionnaire, a quality of life questionnaire and then had the option of activating a suite of Apps called Floodlight. These Apps are great fun and assess multiple aspects of my nervous system including my hand function, my balance, walking speed and my cognition. I found the Floodlight cognition App very hard to complete, but at least it will allow me to monitor the impact of MS on my memory over the next few years.

After completing these outcome measures MS-Connect then presented me with a list of problems and asked me if these problems were correct and if I wanted to add any others to the list. My current list includes fatigue, urinary problems, constipation, anxiety and any potential problems relating to ocrelizumab my current DMT.

MS-Connect is amazing; the list was spot on and it asked me if it was okay to receive notifications about these problems in the future. After saying yes, MS-Connect asked me if there were other topics I would be interested in hearing about. I ticked the box in relation to lifestyle and wellness, comorbidities and new research findings.

Astoninglishly over the next week, I received several notifications to complete my Floodlight tasks and a few self-management notifications about fatigue and bladder management. I really had no idea that coffee, or caffeine, consumption can exacerbate bladder problems. Since cutting out caffeine my urgency has definitely improved. Thank you MS-Connect.

I real surprise was when MS-Connect asked me if I had had my rebaseline MRI scan after starting ocrelizumab. I had no idea about rebaselining, but at least I now understand the logic behind why it is needed. When I asked my MS nurse about the MRI she fobbed me off stating that as ocrelizumab is a high-efficacy DMT, and that Dr Wells, my neurologist, doesn’t monitor MS with MRI, I don’t need one. Apparently, Dr Wells believes clinical monitoring is sufficient to manage MS. Dr Wells and I are going to have a very interesting conversation when we next have a face-2-face meeting.

MS-Connect also asked me what my latest MRI results were. Embarrassingly I have no idea. A wonderful feature is a link to this site called IcoBrain, run by a company called Icometrix, which allows you to upload your own MRI and get a standardised MRI analysis back. I have already contacted the radiology department at my hospital to get all MRI scans on a disk so that I can upload them to the site. I want to know how much brain volume I have lost compared to normal people of my age.

I received a notification today about herpes zoster or shingles. I had no idea it is a potential side effect of ocrelizumab. MS-Connect has given me advice on what to look for in terms of the early symptoms of shingles and that I would need to see my doctor as soon as possible if I thought I had shingles so as to get a course of an antivirals therapy prescribed. Again thank you MS-Connect.

The amount of information buried in MS-Connect is quite amazing. For example, I was browsing a section on MS education and read the section on vitamin D. I had no idea that the dose I have been taking is probably too low and needs to be increased.

The one feature that was disappointing was the one linking me to my MS team. When I searched for them in HCP directory they were not there. This means that they won’t be able to monitor me via MS-Connect, nor will they be able to send me notifications about my upcoming appointments and results. This is very disappointing. My sister gets a reminder the day before her infusion and often gets a notification on the day of her infusion, for example, to come 20 minutes later as her infusion bay is running late. For an NHS service, MS-Connect is simply brilliant.

A feature of MS-Connect that was very illuminating was the section on quality standards and the international league table of how MS Centres are performing relative to each other. I had no idea that MS should be diagnosed within 4 weeks of being referred to a neurologist. It took my neurologist over 7 months to give me a diagnosis. I am particularly impressed with some of the large US clinics who seem to be able to make a diagnosis of MS within days; c’est la vie!

What I like most about MS-connect has been the social aspects. I have been able to link up with my sister, and three of her friends with MS, in a chat room. All she did was send me an email from the App which allowed us to connect as a group in the App. She met all her new friends with MS when coming up for her monthly natalizumab infusions. The five of us chat regularly and share ‘MS experiences’ in private. The social feature has also allowed me to share my Floodlight data and activity monitoring with my sister. We are now competing with each other to see who does the most steps in a day and to see who can squash the most tomatoes in a minute in the Floodlight hand function App. There is nothing like a bit of competition to motivate you to do something.

It is clear whoever designed and made the MS-Connect application does not want to reinvent the wheel. In the ‘Other Resources’ section there are links to other online resources and MS-Connect also allows you to hoover in your data from several other very useful MS applications. I was able to directly import my data from SymTrac and Cleo.

I have only been using MS-Connect for 6 weeks and in that time I have learnt so much about MS and how to self-manage my condition. I feel empowered to ask the right questions and get the most of the time I have with my MS nurse and neurologist. My big task is to now get them to sign-up to MS-Connect and to use it help me and my fellow MSers.

Neurologist, researcher, avid reader, ms & preventive neurology thinker, blogger, runner, gardener, husband, father, dog-owner, cook and wine & food lover.