Karen McTaggart and David Harrison were both diagnosed with MS in 2014, and volunteered to help us review MS Decisions. Here they tell us why they got involved and how they helped.
When I was diagnosed with MS I was advised that Tysabri was my best option as a result of my MRI findings. I was diagnosed with highly active, rapidly evolving, relapsing and remitting MS.
I received support from my neurologist and my MS specialist nurse. They gave me a Tysabri DVD to watch and lots of MS Trust leaflets! I also received lots of support from my husband and my parents in reaching the decision to go ahead with Tysabri.
I looked at the version of MS Decisions which was available at my time of diagnosis, although I felt so unwell I didn’t spend too much time on the internet, but I did read what I could about Tysabri!
When I heard that I the MS Trust was looking to revise MS Decisions I was keen to get involved. I found MS Trust information the most informative to use. It also seemed very clear to me that it was the source of information that medical practitioners used, which I found reassuring and that helped me to deal with my diagnosis. I needed reliable facts and information!
Working with the MS Trust has been good because I felt I could possibly assist other newly or recently diagnosed people of my age group go through their own MS journeys. The MS Trust team asked for the information they need in a very clear and structured way.
I think my input was useful because I could point out things which are relevant to living with MS in Scotland and could draw on my experiences of meeting other people with MS through the meetings I attend in Stirling.
I really hope that MS Decisions helps people with MS and their families to access reliable information they can trust.
I would definitely recommend other people with MS to get involved in MS Trust projects. You will learn a lot about MS by doing it. I would advise doing it after you have started treatment and are tolerating it, so wait at least six months or more after your MS diagnosis before you get involved with a project. It also gave me something useful to do during my MS-enforced career break!
Prior to my official MS diagnosis from a neurologist, I was aware that my symptoms indicated that it was likely that I had MS. So I started doing my own research based on the MS Trust website and others into DMD treatment options a few months before my diagnosis consultation.
My consultant recommended starting on Tecfidera, saying that it was more effective than the injectable interferons with fewer side effects. Based on my own research, Tecfidera was my preferred option too. So we went with that, and I started as soon as it was available on the NHS.
My consultant recommended I visit the MS Trust website and MS Decisions as a credible source of information.
The old version of MS Decisions was very useful in comparing the treatments that were available a few years ago. Though obviously it needed to be updated to include the treatments which have become available more recently.
Personally I wanted to avoid the need for regular injections, so was more interested in the newer oral therapies.
For me, the MS Trust website is a valuable source of information on MS, which I have turned to many times during the months leading up to and after my diagnosis. It is very helpful to have the condition clearly explained, and the video clips are great. I also like the weekly news emails which provide an overview of recent research into MS and new treatments that are being developed.
Given that there are an increasing number of treatment options for MS, I think it is vitally important to provide people with MS with an easy-to-use and easy-to-understand guide to help them decide whether DMDs are right for them, and how to make an informed choice between the options. I believe that people with MS should be closely involved in choosing the treatment that is right for them in partnership with their medical team. Hopefully, the updated MS Decisions will help people with MS to do that.
I found the experience of working with the MS Trust very positive. I was given plenty of time to review materials and my feedback was always acknowledged and welcomed (I hope).
Hopefully, my input has helped, if only in part as the draft materials were very good! I provided input based on my own experiences of going through the diagnosis process and the treatment that I know the best, Tecfidera.
I hope the new MS Decisions will help people with MS to decide whether a DMD is right for them, and if so, to make an informed choice about which of the currently available treatments are best for them. There are so many factors to consider, so I think it’s important to take the time to do your own research and to have a credible guide to help navigate you through the process.
If you have the time and want to make a contribution, I would definitely recommend volunteering to help the MS Trust. Your input will be highly appreciated, as it’s us people with MS who know best what living with the condition is like.