Last updated: February 2014
I was diagnosed in 2003 with what they thought was RRMS, but now the doctor thinks it may have been PPMS from the start. It can be hard to tell, sometimes...or so he says. Looking back, I have no clear cut relapses and remissions like so many people told me they have.
My symptoms only seemed to get worse...slowly, but still worse. Meds have not helped me at all. even steroids. not like I was hoping they would anyway. the only thing that has ever been any benefit to me has been pt. and that has helped me by improvising to learn to deal safely with the symptoms. which is very valuable to me, since I live alone. The doctor was concerned about my being alone, but I have since gotten a one floor handicap friendly apt. in a secure building with nice people for neighbors. so it is all good. I have aides coming in 5 days a week to help with ADL'S, therapists to help with mobility issues and such, and nurses as needed for medical issues. it is as good as it gets for now, and i am so blessed that way.
I have 4 grown kids that I am in frequent contact with, and a church I am active in, as much as possible. And yes, I hear you when you say you are fed up with people saying you look so good. I know they mean well, but it is truly frustrating! it almost seems like they are saying you are lying. I miss working and doing all of the "spur of the moment" stuff I used to...and still miss them. sometimes I don't think other people realize everything for me has to have a "plan". Like going to the store, or laundry, or even church, all of them need planning! It is like I am going to the moon or something! and after those outings, I am totally exhausted...but it is worth it...tiring beyond belief, but worth it. I am not a homebody, so I do my best to get out, even if it is only for a short walk...a VERY short one. but such is my life at this point in time.
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