I had a new MRI scan in February, after a very rocky time on Gilenya, which showed no new activity since the MRI I had before starting it (around a year before) I know this is good news however, I don’t understand why I’m relapsing so much - on my third almost back to back (in fact, it’s felt almost like one long continuous one since November 2013) and this lack of MRI activtiy is likely to be a barrier to getting drugs like Tysabri and Lemtrada.
So, does the lack of new activity indicate that Gilenya is working? (even though it doesn’t feel like it) Or could it indicate I’ve actually moved into secondary progressive? My first relapse was over fourteen years ago and, although foot drop has worsened, I’ve never had any mobiliy issues and am still walking unaided - surely this can’t be the case?
I just don’t understand it…?
Oh and any tips on how to “get” an active lesion would be great as I really want to get on Lemtrada!
Hi I dont have an MS dx, but that doesnt mean I dont have it. I have one lesion which over 3 years has not got any worse. Neuros seem to differ in opinion on what is wrong with me. One theory is I had an isolated attack which triggered the development of spasticty. The attack happened in 2008. I recovered well and was only left with slight right sided weakness. So little in fact that doctors didnt pick it up. In 2010 I started to get spasticity which has steadily got worse - neuros blame that one attack as damge takes time to fully appear.
Maybe you are not having relapses just suffering effects from old ones.
Well, that’s an interesting point. I never suffered from spasicity or spasms, except for midly in my lower back sometimes during relapses (although I didn’t realise what it was at the time) but since being on Gilenya, it is horrendous. My calves are so tight at times, I can barely walk, I am bent over double some mornings and generally stiffer all over especially after sitting for long periods. This happened during the first ‘relapse’ I had since starting Gilenya (two or three weeks in) and has never really gone away. I’m taking Tizanidine to try and ease it.
I had my worst ever relapse at the end of 2012 - it lasted eight weeks and for the first time, I felt really poorly with it - it does seem that what happened during that relapse keeps flaring up (whole of my left side effected - optic neuritis, foot drop, pain, numbness all worsen) but I have definitely had new symptoms since being on Gilenya and I am definitely classing them as relapses and not just because they lasted 24 hours (three weeks, five weeks, four weeks and currently in the fourth week of another) however, whether they are “clinically significant” is another matter.
I have finally persuaded a neurologist to refer me to Addenbrookes to see what they can offer me - just waiting for the appointment to come through.
