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@dam205 

EditedLast reply

dam205

Primary Progressive MS - A touch Lost

Hello all, Well I don't know where to begin!? Guess I should start here. Joined this site nearly 4 years ago just after I was diagnosed. I have had this thing approximately 20 years. Not on any medication, not that there seems to be much, the same as help with this - not much. I suppose when I was diagnosed with this I just got on with it, although it answered a lot of questions as to why I didn't appear to be normal. Over the years the symptoms have got progressively worse and I'm not sure how much longer I can ignore them! I was made redundant from my job of 15 years where I was a Manager. Have to leave it there about that. How does everyone cope with not being able to do what they once could? I accept I need help now but there seems to be a road block in pretty much everything you try to do/claim. I need to help support my family! As the title suggests 'A touch lost' maybe a 'Whole lot lost!' This is just my experience wrong or right. Vent Over.
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@watsoncraig
@watsoncraig
 

Hi also PPMS and 2 half doses of Ocrevus in. was diagnosed almost 5 years ago and there was nothing and I felt overlooked,Neuro retired and his replacement had me scanned and on Ocrevus quick sharpish. I was a manager offshore which ended a few weeks after I was diagnosed (well I wouldn’t want to sit next to me on a chopper)soIwent back to doing what I did 20years ago and have only recently stopped working due to this thief.

@ItsMewithMS
@ItsMewithMS
 

One of my main life motto's is "Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light." I push back each day on the restrictions that MS tries to force on me. I am glad I was Dx when I was, and by who treated me, rather than years before when it was felt there was nothing they could do or try. I was Dx in 2005 when the first drugs had just been introduced. While we recognize them now as not very effective there was such hope and energy towards quickly understanding and "curing" MS. Alas things haven't progressed quite the quick but I suspect difficult things don't. But while there were only a couple of choices back then there are more like 20 now. I have been upped to Ocrevus just as my condition has transitioned more into SPMS. So, yes it stinks, but many things do. My sister's battle with breast cancer serves as my example as to how to really fight...and when to stop. I no longer take the defeatist stance or take the pity path. I also took steps over the years to set myself up the best I could. I saved a lot knowing I would need a lot instead of spending at the rate my co-workers did on things like boats and vacations, etc. Instead I paid out my mortgage and we built and moved into a new house in the country designed to be adaptable as my condition required. Just practical. By the time MS basically pushed me from work I was ready for it. Now with much of the country working from home I am looking into getting back into the workforce as many companies have figure out that working from home is an option they should embrace and truly does work. Finding more to apply for as time goes on and considering jumping back into work- so what MS has taken away I may try to take back...