Tom S
Member
- Joined
- May 29, 2008
- Messages
- 12
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- IL
- City
- Geneva
I'm a newbie, so please excuse any faux pas or breaches of etiquette. I noticed something wrong with my muscles & reflexes about 18 months ago. Internist dismissed my concerns. Cramps and twitches got very much worse and had constant pain and weakness in forearms. Kept complaining. Saw neurologist for EMG tests last Aug. Said I was tired. Things got worse. Went back for 2nd round in Dec. Neuro said not enough to worry about, but you don't have ALS. Weaned myself off Baclofen for Christmas. Told everyone it wasn't serious. Assigned to physical therapy. PT said "you've got a LOT going on and none of it's good". After 4 wks was weaker than at start. Neck MRI. Some spinal cord compression but not enough to explain symptoms. Back to neuro. "somthing's going on." You want me to do another EMG? No - I want someone who can tell me what's going on.
More tests & biopsy from a REAL DOCTOR result in DX of MND 5/1/08. I've lost 30# since New Year's - 25# was muscle. Balance is poor, arm strength is about gone and legs are going. Have found braces for carpal tunnel help with arms. Don't know what to do about neck. I've tried to talk about the future with my wife. She will not talk about it. She wants to go to Italy this fall. Given the course of things, I don't see that happening. Should I humor her? This is so not easy. The prospect of being reduced to a purely existential existence is challenging. How hard to we push our condition on others? Do we not owe them something other than months of sacrifice followed by death?
What do we owe ourselves? I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else.
Thanks in advance for your input.
More tests & biopsy from a REAL DOCTOR result in DX of MND 5/1/08. I've lost 30# since New Year's - 25# was muscle. Balance is poor, arm strength is about gone and legs are going. Have found braces for carpal tunnel help with arms. Don't know what to do about neck. I've tried to talk about the future with my wife. She will not talk about it. She wants to go to Italy this fall. Given the course of things, I don't see that happening. Should I humor her? This is so not easy. The prospect of being reduced to a purely existential existence is challenging. How hard to we push our condition on others? Do we not owe them something other than months of sacrifice followed by death?
What do we owe ourselves? I try to set achievable goals every day that require some effort beyond myself - something that exists, if only briefly outside myself. If I can do that, it's a good day regardless of anything else.
Thanks in advance for your input.