emp1217
New member
- Joined
- Jan 29, 2015
- Messages
- 6
- Reason
- Loved one DX
- Country
- US
- State
- IN
- City
- West Harrison
Hi all. My sister was just diagnosed with probable ALS at the Mayo Clinic, and my family is reeling from the news. She is 28 with 3 children, and this was not at all the diagnosis we were expecting. She had already been cleared of ALS/PLS by her local neurologist, but this was what she left Mayo with as a diagnosis. There are 7 siblings in my family, and we are all very close. She and I are the 2 oldest, and our siblings range down to 16 years old. It is truly overwhelming right now, knowing the pain she is feeling for herself and her children, and seeing the heartbreak of my parents and siblings.
I have the blessing and curse of being a physical therapist who specializes neuromuscular conditions, and especially in assistive technology. I've worked with several PALS and I know what's coming and that is almost too much to bear. However, I have a lot of local connections and we are trying to get her into the ALS clinic here for a second opinion or just to have a more specialized team, depending on the outcome. I know the likelihood is that this truly is ALS, but the doctors in Mayo said it was an "atypical presentation" and the physician who performed her emg wasn't completely confident it was ALS. It seems like such a huge diagnosis to dump on someone and then send them home with no resources locally.
Regardless, I just wanted to introduce myself and look for ways to support my sister. That is my main focus now is being there for her and getting her through this, one step at a time.
I have the blessing and curse of being a physical therapist who specializes neuromuscular conditions, and especially in assistive technology. I've worked with several PALS and I know what's coming and that is almost too much to bear. However, I have a lot of local connections and we are trying to get her into the ALS clinic here for a second opinion or just to have a more specialized team, depending on the outcome. I know the likelihood is that this truly is ALS, but the doctors in Mayo said it was an "atypical presentation" and the physician who performed her emg wasn't completely confident it was ALS. It seems like such a huge diagnosis to dump on someone and then send them home with no resources locally.
Regardless, I just wanted to introduce myself and look for ways to support my sister. That is my main focus now is being there for her and getting her through this, one step at a time.