I have relapsing-remitting MS. Diagnosed June 2015. Been taking Avonex since January 2016.
When diagnosed, I had MRI scans (brain & spine) with and without contrast dye. Quoting from my neurologist letters, my lesion load was multiple rounded and oval subcortical and periventricular white matter lesions and a large periventricular white matter lesion in my brain. Lesions in my spine at C7, C8 and T1, and possible lesions at T2-T3.
Symptom wise I have a weak left thigh; numbness; bad fatigue; burning hip pain; neck & back spasms, pain in arm/hand, MS-hug etc. So, in the great scheme of things my symptoms are not too bad.
I had an MRI in June this year on brain and spine, with and without contrast dye, and I received a letter in the post with two lines only which said that compared to the MRI scans done in 2015, a number of my existing brain lesions had improved, but I had one new lesion.
I have an appointment with my neurologist in October – which I might try to move forward – and I wanted seek some thoughts here:
I understand that lesions can improve (reduce/disappear) which can be re-myelination, but that the newly remyelinated nerve will not really function as well as the original nerve. Have you heard or read the same?
I understand that disease modifying drugs dampen down disease activity. Whilst my improved lesions are very good, should I speak to my neurologist about the fact that after taking Avonex for only 1.5 yrs, I have a new brain lesion? I think I am confused about whether Avonex is working given that there is improvement, but also a new lesion.
I am aware that many people feel that beta-inferons are outdated, and some people think they should no longer be prescribed. On the basis of the new brain lesion, should I think about switching DMD?
Would a new lesion be counted as a relapse (or a clinical relapse?) Or is a relapse simply a worsening/new symptom (if the symptom met the relapse criteria)?
Sorry for the length and for many questions.