pssst
New member
- Joined
- Aug 22, 2010
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 06/2010
- Country
- US
- State
- KS
- City
- Overland Park
Diagnosed June of this year. I was on the verge of a fresh start, looking forward to growth and love and sex and happiness. A few months later, walking is pretty hard (standing is a bit harder), my left arm is weak, my left-hand grip strength is for crap. I'm falling apart, twitch by twitch.
I owe this to my dad, whose been going around six years with the same thing. I am convinced I have far less time.
The people at the big-time University clinic here have no empathy, so to hell with them.
I hear that some people with ALS get better, or that this sometimes just peaks. However, as I don't gamble, I'm not cheered by whatever happens on the fringe of the bell curve.
I'm on Rilutek, antidepressants, C, E, and b-c.
Both EMG and NVC point to (in the doctor's words) what can only be ALS. The second opinion concurs.
I have a pending prescription (if that's the word) to get tested for heavy metals, but reading up on this doesn't sound anything like what I have. I don't want the test, because I cannot handle the despair of negative results. (I've experienced this with the negative MRI and blood panels, and can't stand the feeling.)
My stress level is unimaginable. (Er...perhaps not, given where I'm posting.) Every time I think about what's going on, I get a metallic taste in my mouth, which seems to be from stress. So ALS causes stress, which causes more stress, etc.
I read about what this does to relationships, and it seems that the ideas I had about forming friendships, romantic relationships, or other connections are just pointless, as I will only end up causing catastrophic hurt in others. Who the hell is going to try and fall in love with someone who can't walk well, is only going to get worse, and is soon toast?
I want to walk, to bicycle, to skip (not much...just periodically). I want to learn an instrument. I want to beam with pleasure. I want to see Japan. I want to have vigorous sex and eat food...not at the same time, necessarily. My universe is ending.
I don't have any questions. I just needed to get the things in my head in front of me, and for whatever reason, share them with others.
Thanks.
I owe this to my dad, whose been going around six years with the same thing. I am convinced I have far less time.
The people at the big-time University clinic here have no empathy, so to hell with them.
I hear that some people with ALS get better, or that this sometimes just peaks. However, as I don't gamble, I'm not cheered by whatever happens on the fringe of the bell curve.
I'm on Rilutek, antidepressants, C, E, and b-c.
Both EMG and NVC point to (in the doctor's words) what can only be ALS. The second opinion concurs.
I have a pending prescription (if that's the word) to get tested for heavy metals, but reading up on this doesn't sound anything like what I have. I don't want the test, because I cannot handle the despair of negative results. (I've experienced this with the negative MRI and blood panels, and can't stand the feeling.)
My stress level is unimaginable. (Er...perhaps not, given where I'm posting.) Every time I think about what's going on, I get a metallic taste in my mouth, which seems to be from stress. So ALS causes stress, which causes more stress, etc.
I read about what this does to relationships, and it seems that the ideas I had about forming friendships, romantic relationships, or other connections are just pointless, as I will only end up causing catastrophic hurt in others. Who the hell is going to try and fall in love with someone who can't walk well, is only going to get worse, and is soon toast?
I want to walk, to bicycle, to skip (not much...just periodically). I want to learn an instrument. I want to beam with pleasure. I want to see Japan. I want to have vigorous sex and eat food...not at the same time, necessarily. My universe is ending.
I don't have any questions. I just needed to get the things in my head in front of me, and for whatever reason, share them with others.
Thanks.