This is my first post on this forum and I guess i’m just looking for a little moral support and insight really , I’ll appoligise now for the length of my post…
I received a neuro appt through the post on Thursday and it got me thinking about my last appointment in 2011, which to me felt like a bit of a waste of time. I remembered one of the questions which was have you had any relapses? (Dxd as RRMS in 2010) No i hadn’t! It came down to everything i was feeling wasn’t a relapse just part and parcel of having MS, so i asked myself that question again Thursday and again i will have to say No i haven’t…the thing is i have only ever had 2 relapses, the first in 2008 and again in 2009 which led to the dxs in 2010. However it feels that instead of relapses some things are gradually just getting harder (Walking upstairs, standing for lengths of time, fatigue, twitches, cramps etc) i also experienced my first tremour this year after standing on the train to London and again on 3 seperate occasions.
My head went off thinking that maybe i didn’t have RRMS but a slow progressive form, this fear i know comes from watching my brother deteriorate rapidly with PPMS and who died this year after having his 1st symptom 7 years ago.
I am not on any medication/treatment and am trying to learn to manage the way i feel by basically by not exurting myself or getting stressed as this seems to make me feel worse. My concern i guess is that if i have a progressive form however mild but not dxed could i be missing out on treatment that may help me in the future???
I want to make the most of my neuro appt but always feel i am being neurotic due to the amount of things i want to squeeze into the 10 minute slot, only then to feel like they are not taking me seriously.
Anyway thanks for reading my post.