pmbenb83
Distinguished member
- Joined
- Aug 6, 2007
- Messages
- 400
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Stafford
Hi Everyone,
I just wanted to let you know that my husband, Eric, had his 3rd appt at UVA yesterday, and our fears were confirmed. He does have ALS, but they said he has a slow progression. I guess that it is a slow progression is good; if there is such a thing as something good with ALS. Sounds like an oxymoron to me. The doctors said that they have a few patients that they have been seeing for 15-18 years, which gave us hope again. Eric turns 46 this month, so to reach 66 would be great!
We asked about the lithium treatment, and they (his 2 docs) feel that they want the therapy to be out for a while longer before considering it for him. Their reason is that another drug that was successful on mice caused the progression to speed up in humans. Since Eric has a slow progression, they don't want to risk something possibly causing it to speed up. I'm glad to hear they are cautious with him, but disappointed, because I want this to stop so badly! They did give him Rilutek, which I'm not sure how much benefit this will be, but anything is better than nothing that's for sure.
Monday, he will turn in his paperwork to retire early on disability, and we will go from there. We do know that once he is retired and his checks start coming in (an important factor) we will start traveling. We have a lot of living to do and memories to make!
Thanks for all of your suggestions and help over the past few months. I'm sure we will have a million more questions as we go along, and I know this is the place to turn to get honest opinions, which is a great comfort to us.
Take care.
Pam B in Va
I just wanted to let you know that my husband, Eric, had his 3rd appt at UVA yesterday, and our fears were confirmed. He does have ALS, but they said he has a slow progression. I guess that it is a slow progression is good; if there is such a thing as something good with ALS. Sounds like an oxymoron to me. The doctors said that they have a few patients that they have been seeing for 15-18 years, which gave us hope again. Eric turns 46 this month, so to reach 66 would be great!
We asked about the lithium treatment, and they (his 2 docs) feel that they want the therapy to be out for a while longer before considering it for him. Their reason is that another drug that was successful on mice caused the progression to speed up in humans. Since Eric has a slow progression, they don't want to risk something possibly causing it to speed up. I'm glad to hear they are cautious with him, but disappointed, because I want this to stop so badly! They did give him Rilutek, which I'm not sure how much benefit this will be, but anything is better than nothing that's for sure.
Monday, he will turn in his paperwork to retire early on disability, and we will go from there. We do know that once he is retired and his checks start coming in (an important factor) we will start traveling. We have a lot of living to do and memories to make!
Thanks for all of your suggestions and help over the past few months. I'm sure we will have a million more questions as we go along, and I know this is the place to turn to get honest opinions, which is a great comfort to us.
Take care.
Pam B in Va