Due to the input in the MyDystonia App, my doctor adjusted the btx treatment, which worked out better for me. My symptoms of dystonia is now less noticeable and I have better quality of life.
A very nice tool that was developed is MyDystonia App that allows the patient to track the change after the injection and to have a very precise diary to show to the neurologist. This helps a lot the neurologist in the evaluation at three months after the injection because it gives a window on patient benefit during the preceeding 3 months.
I prefer to show my consultant a graph of my symptoms over the 3 months in between injections. I find it really easy to read and analyse and so does my consultant. The first time I showed it to him he was quite literally on the edge of his seat! He was really excited to see something so useful to dystonia patients and their Doctor/Consultant/Nurse etc.
I have been using the MyDystonia app to record my symptoms for a few years now. I find it very easy to use and a lot of the questions are very relevant to my condition. I did add some extra questions myself (very easy to do but must be done on the website rather than in the app) to really tailor the app to my own dystonia expe-rience. There are a few questions which are not relevant to me so I don’t answer those ones at all.
It makes it easy to see when I experience the best effect of my treatment and of course the worse times too and this is what my consultant is interested in, he is always trying to reduce my ‘worse’ times.
Without the app it would be much more difficult to analyse my symptoms over the three month period I normally have between appointments.
I am now looking forward to version 2.0 being released this year with even more very useful sections.
I do sometimes forget to complete the diary so have set up a reminder for once a week which for me is enough. Some people prefer to complete it more often and some less often, it is up to the user how they make the best use the app.