We know that MS is most often diagnosed in women, and at an age when many people will not have completed, or started, their families when they receive their diagnosis. Becoming pregnant is of course a life-changing event for a woman. For a woman living with MS, becoming pregnant comes with many more questions and considerations.
There are so many questions that someone with MS might want the answers to, and too often neurologists and MS nurses don’t have these answers. In order to try to help address this, a group of neurologists are looking at setting up a UK MS pregnancy register, that would collect information from people with MS about their pregnancy and their MS both during and after pregnancy.
We hope that this could also be a good source of information for people with MS thinking about starting a family – we could provide links to relevant guidelines and blog posts discussing and explaining recent research around pregnancy and MS. We need help from people with MS to let us know what kind of information might be useful to include. In order for this to succeed people with MS need to be an active part of this process. Most importantly, we need to make sure we are asking the questions that people with MS want to have answered, which may not be the same questions that a neurologist would try to answer.
I’ve put together a few questions to help me to understand what kind of questions you might like such a study to try to answer. I want to hear what people really think. If you’d prefer, please leave comments below.
Complete the survey here: https://forms.gle/Ce73Qd2aBAzfLfsQ8