smblaha
Member
- Joined
- Jan 10, 2010
- Messages
- 10
- Reason
- DX UMND/PLS
- Diagnosis
- 12/2009
- Country
- US
- State
- IL
- City
- Darien
I am thinking about going to Mayo or the Cleveland Clinic. I feel like an experiment when I go to my neurologist. All she does is write down my symptoms and check my strength. I'm losing the ability to speak, I'm choking, I drool (new), I can't catch my breath, I'm dizzy, I fall, my left foot feels like a stump (new), my back hurts all the time, I lose my balance, I can't feel my right shoulder, my neck hurts like bones are out of place, etc etc. Nobody can tell me what comes next or how much I'm going to lose. I write down questions and symptoms and things that happen, but I don't get the answers, I walk out of the doctors office thinking, Is this it? Do I just wait for the next thing to go? My new job doesn't know what I'm going through, I've only been there a few months and I can't afford to lose it so I haven't told them. I know I can't lose my job but the minute they find out I'm sick, I become incapable and I'm in management. The hardest thing is I can't talk, and when I get upset I REALLY can't talk, sooner or later they're going to figure out something's wrong with me or they are going to accuse me of being an alchoholic because I sound drunk. I don't have anyone to talk to. Nobody really understands and I can't explain. I want to fix it, but I don't think that's going to be possible and I can't handle it.
That is the reason I feel like seeking a second opinion, but on the other hand, what's the point? Either I'm dying of a horrible debilitating disease in a couple of years, or I'll linger on a vegetable on life support can't hold up my head, can't eat, can't walk, can't talk which could go on for endless years, I can't live like that being trapped in a shell with only my brain, thinking and thinking and thinking but unable to communicate? Would I be kept alive for my family, or for the QUALITY of my life? How do you deal with this kind of information? Don't tell me to look on the bright side, because I don't see one. I cry all the time. How do you fight when you feel like giving up? Is it worth it to bother with a second opinion when all my symptoms match everyone else? Do you just wait around for the next thing to go, or do you try to find out another answer? Anybody's opinion matters to me, cause I have nobody else.
That is the reason I feel like seeking a second opinion, but on the other hand, what's the point? Either I'm dying of a horrible debilitating disease in a couple of years, or I'll linger on a vegetable on life support can't hold up my head, can't eat, can't walk, can't talk which could go on for endless years, I can't live like that being trapped in a shell with only my brain, thinking and thinking and thinking but unable to communicate? Would I be kept alive for my family, or for the QUALITY of my life? How do you deal with this kind of information? Don't tell me to look on the bright side, because I don't see one. I cry all the time. How do you fight when you feel like giving up? Is it worth it to bother with a second opinion when all my symptoms match everyone else? Do you just wait around for the next thing to go, or do you try to find out another answer? Anybody's opinion matters to me, cause I have nobody else.