Advanced MS
Share your experience with Advanced MS. Get the conversation started.
I have had MS since 1997. My first symptoms started as far back as 1986. I was diagnosed at 24. 47 now
I had my first symptoms in 1978 and was diagnosed three years later. Not bad, for a time before MRIs! I didn't go on Disease modulating therapy until 2000, but the first one I tried turned out to be very effective, and I've been doing fairly well since then. Some symptoms have reversed, other symptoms have persisted, but I try to stay positive, and goodness knows, finding this forum has been a blessing.
The realisation that a bad day may be the best day you will ever have; that it ain’t gonna get better, just slowly worse is devastating, and if you’re in England can’t even finish yourself off ... but no one talks of that, so thanks for setting up an advanced MS forum- it’s gone from hard to soul destroying - that no amount of adapting or drugs or music or mindfulness can overcome...oh and I’m not brave or tenacious; I just have no other choice - so don’t patronise me with your sanctimonious pity; and don’t use me to help you feel like a better person...
I am so glad someone else can't stand all those inspirational sayings. I think I hate, "I might have MS, but it doesn't have me" the most because MS does have me. For the rest of my life I will have to allow for the fact that I have MS. And that sucks. one more gripe….MS is NOT a “journey”. It is a life of dismal prospects filled with almost constant pain and discomfort. There….I feel relieved! I am seldom cheerful.
I hear you
... I don't think I'm that advanced with PPMS, but dread what's down the road
