MS-Selfie

Self-Management

MS-Selfie – helping you to self-manage your MS  

If you are someone living with MS, MS-Selfie is for you. It is written by Professor Giovannoni (aka Prof G), a world-renowned MS expert and researcher with over 30 years of experience in MS and related disorders. Here are some reasons to check it out!  

Confidence to know what to ask your MS team 

Before making any important treatment decisions, you will want to understand the essential aspects of your MS treatment strategy and to consider the answers to some key questions. For example, can I know my prognosis, that is, how my MS might develop? And can I do anything to improve it? The main differences in treatment approaches are explained to give you the relevant information for a conversation with your MS team.   

Guidance to understand your treatment options  

To help you weigh up the benefits and risks of specific disease-modifying therapies (DMTs), there are short summaries about all the MS drugs licensed in the UK. If you prefer a deeper dive and more detail, you can read the full description of each drug. What if you need to switch to a different DMT? Maybe your MS is getting worse, your current DMT has unacceptable adverse events, or your disease management is complicated by a co-existing disease or the desire to become pregnant. A very useful switching overview helps you see the treatment options at a glance and provides direct links to fuller information.   

Help with monitoring adverse events 

Whichever DMT you and your health team agree is best for you, there will be numerous tests at baseline (treatment start) and at regular intervals after that. The complications associated with immunosuppressive DMTs vary considerably. Before discussing the details with your MS team, why not find out how to reduce the chance of adverse events on specific DMTs and the monitoring requirements for the different options?   

Honest answers to difficult questions  

Are you ever frustrated that information for people with MS does not fully address your concerns? Prof G tries not to patronise his readers – he explains complex concepts clearly, based on the latest scientific evidence. MS-Selfie microsite articles are for people who want honest answers to important questions. Many are prefaced with key points so you can decide whether to read further. In addition, a comprehensive glossary explains scientific terms that may be unfamiliar to non-scientists.   

Reliable resources to inform and empower you 

During the COVID-19 pandemic, healthcare provision was massively disrupted; people with MS were seeking reliable, up-to-date information about their disease. This was when Prof G set up MS-Selfie, first as a regular newsletter to subscribers to the blog archive, where readers can comment and ask questions, and later as a curated website. Both resources are work in progress, and new content is added regularly. Please explore and consider subscribing to the newsletters and registering for the website. The service is free, but voluntary donations and subscriptions are welcome to help cover the costs of editing and website development.   

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