worrieddaughter77
Active member
- Joined
- Oct 6, 2017
- Messages
- 95
- Reason
- Loved one DX
- Diagnosis
- 10/2017
- Country
- US
- State
- IL
- City
- Oulu
Hello,
My dad's first symptoms were in December 2016, he started slurring some consonants. Since then we were trying to find out what was happening to him, but the local neurologist was not able to finalize diagnosis. Unfortunately, he also told us that he has a 90% confidence my dad does not have ALS, MG or MS. In June my dad was not able to talk at all, and started having weakness in his right hand and leg. His doctor referred him to North Western University Hospital. WE went there two days ago.
There, the two amazing doctors, after looking through all of my dad's tests and records said that we should prepare for the worst. That it is most likely some kind of MND, most likely ALS, with bulbar onset. I was devastated. We still all are. The doctors said that usually they see the patients need some kind of assisted ventilation needed in 3-5 years. They also said we need to repeat an EMG and come back in 3 months. They want to see my dad every three months from now on.
What does it all mean? I am trying to figure out what to expect from now on. For how long will my dad be able to walk and be more or less active? What is the worst case scenario and what is the best?
Thank you!
Anna:?:
My dad's first symptoms were in December 2016, he started slurring some consonants. Since then we were trying to find out what was happening to him, but the local neurologist was not able to finalize diagnosis. Unfortunately, he also told us that he has a 90% confidence my dad does not have ALS, MG or MS. In June my dad was not able to talk at all, and started having weakness in his right hand and leg. His doctor referred him to North Western University Hospital. WE went there two days ago.
There, the two amazing doctors, after looking through all of my dad's tests and records said that we should prepare for the worst. That it is most likely some kind of MND, most likely ALS, with bulbar onset. I was devastated. We still all are. The doctors said that usually they see the patients need some kind of assisted ventilation needed in 3-5 years. They also said we need to repeat an EMG and come back in 3 months. They want to see my dad every three months from now on.
What does it all mean? I am trying to figure out what to expect from now on. For how long will my dad be able to walk and be more or less active? What is the worst case scenario and what is the best?
Thank you!
Anna:?: