Making the MS Register Report Work for Me

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Guest blog by Register participant Michele focusing on how she uses her personalised feedback report in her MS appointments.

I’m Michèle and have been signed up with MS Register for 18 months after seeing an article about the study in an MS Society newsletter in 2022.

I was diagnosed with RRMS at the age of 48 in April 2020 after a sudden onset in December 2019 of double vision, vomit inducing dizziness, slurred speech and tremors/altered sensation in my hands. Three years on, I’ve not had any further relapses but I have been left with ongoing mobility and coordination issues as well as experiencing extreme fatigue with the slightest bit of physical activity.

Prior to 2019, I had never had any kind of MS symptoms, so to go from being an independent and fairly active person who worked full time to someone who can no longer drive, only work part time, and can no longer easily take part in activities with friends and family, it has been a bit of a life changing experience. Luckily my diagnosis was not that scary as at least I knew a little about the condition and how differently it affects people as my father was diagnosed with MS in the 1980s. I can imagine for those who are not so knowledgeable about MS would find being diagnosed very frightening, confusing and possibly quite lonely if they do not know someone else with the condition.

I have so far completed the MS Register questionnaire on three occasions and, whilst hopefully providing some useful real-life evidence for the study, I have also found the reports and graphs produced after each questionnaire session, extremely useful in understanding and monitoring my own MS Journey.

With the Covid pandemic and my change in lifestyle I have found the last few years have been a bit of a blur. Remembering exactly when symptoms manifested, their severity and how they were impacting me both physically and mentally over time, hard to accurately record. My MS Register report helps give me a record of that information. This has been particularly useful when attending my annual review with my neurologist and when speaking to the MS Nurses as I can refer to the report to give accurate and true information to them as well as prompting me to not forget to discuss if I had been having new symptoms or older symptoms had disappeared. In fact, at my last review with my neurologist, I went to the appointment with a copy of my report which I gave to him. He actually said how useful it was to have that information and how he wished all his MS patients came with their own MS Register reports to put in their files. I believe that if your MS team has a relatively accurate picture of how MS affects you it will help to get you referred for other support like physiotherapy, speech therapy or counselling.

Since being diagnosed I have become very involved with the MS community. Locally, I am a communications volunteer with the Bradford MS Society Group and help with the Facebook page for the Skipton, Craven & Keighley MS Society Group. I also take part in many online MS discussion groups and forums both nationally and internationally. I am very open about my condition as I do believe the more people that are aware and knowledgeable about how MS and how differently it can affect those people, the more likely more effective treatments or even a cure is developed.