worrieddaughter77
Active member
- Joined
- Oct 6, 2017
- Messages
- 95
- Reason
- Loved one DX
- Diagnosis
- 10/2017
- Country
- US
- State
- IL
- City
- Oulu
My dad has been diagnosed with "MND likely ALS " a month ago in North Western University hospital in Chicago. In 4 days we are going to his second ALS clinic visit. During our last visit, i was too overwhelmed and unprepared to ask questions, but i want to make sure i am all of the important questions this time.
I would like to run these questions by you, and see if you have any suggestions/ additions.
1. During the 9 months it took to diagnose my dad, his local doctor prescribed prednisone, thinking he has myasthenia gravis. Could prednisone have accelerated his progression?
2. 4 years ago my mom and dad moved from Ukraine to the US because of the war in Ukraine with Russia. Could stress of moving to another country have triggered ALS?
3. When do you recommend inserting PEG?
4. Is dad's progression fast,* or average?
5. How do we know if his breathing is getting worse or not.* How can we monitor it* at home?
6. When can we start on rilutek, and why haven't we started yet?
7. When can we start radicava?
8. Can we do genetic testing to see if it is genetic?
9. Do you recommend taking supplements?
10. Are there drug trials that we can join?
This is it for now. My brain is scrambled really...
Thank you all! This forum so far has been an invaluable resource. I have learned so much from it.
Anna
I would like to run these questions by you, and see if you have any suggestions/ additions.
1. During the 9 months it took to diagnose my dad, his local doctor prescribed prednisone, thinking he has myasthenia gravis. Could prednisone have accelerated his progression?
2. 4 years ago my mom and dad moved from Ukraine to the US because of the war in Ukraine with Russia. Could stress of moving to another country have triggered ALS?
3. When do you recommend inserting PEG?
4. Is dad's progression fast,* or average?
5. How do we know if his breathing is getting worse or not.* How can we monitor it* at home?
6. When can we start on rilutek, and why haven't we started yet?
7. When can we start radicava?
8. Can we do genetic testing to see if it is genetic?
9. Do you recommend taking supplements?
10. Are there drug trials that we can join?
This is it for now. My brain is scrambled really...
Thank you all! This forum so far has been an invaluable resource. I have learned so much from it.
Anna