Hi....I have Progressive Relapsing MS which was not detected for 20 yrs......no doctor figured it out no matter what I did or said. It was finally found by accient in 2007. I have tried Chemo, and interfearon. Currently, I am on High Dose Steroidsfor 3 days in a row every month and copaxine.
I am trying to accept the fact that the Chemo did nothing for me after a year and now there is no more treatment because it was detected too late.
Some days I am so weak I cannot move....I try to get up from bed and sway into everything on the way to the bathroom. I get short of breath moving and at times the pain is horrendous. I just got pain pills to deal with this but I only take them if its horrendous pain.
What I wanted to say was sometimes when I have trouble breathing and am so weak I cannot lift a finger and am confused, I wonder if its my last day.
I honestly don't know if or when its my last day.
The dread is starting to sink in of my fate.
One day I will not be able to move my arms and legs.
I am Sorry Cindy that your boyfriend is suffering along with you. I do really understand and I know its not easy. All we can do is keep fighting the good fight and hope for a cure to be discovered.
I am very fortunate because I found a doctor in my area that has MS himself....he is on no picnic either and it is comforting when he says "Your talking to someone who understands"
None of my family understands.......when I try to update them...they say "But you look so good"
Trust me when I say I understand and I wish you the best.....try to ignore people who don't get it....it will just frustrate you.
A few weeks ago I decided it was time to tell everyone "Either support me with my illness or get out of my way and bite me"
That seemed to register easier. Trust me, it takes a very strong person to do that.
I don't want pity........I just want understanding and hopefully when day I will at least get that. :)