harlo
Member
- Joined
- Sep 5, 2015
- Messages
- 17
- Reason
- PALS
- Diagnosis
- 06/2014
- Country
- US
- State
- Fl
- City
- Sarrasota
I was diagnosed with bulbar onset in June,2014. It is slow progression so far, but is getting worse. I still have use of arms, hands and legs, but can't talk and have to use peg tube for 90 percent of nourishment. I've been having more and more choking and breathing problems, especially in the evening. My primary care doctor is great and very carrying, but,admittedly, knows nothing about als. The clinic I attend consistently postpones the appointments.. , never returns phone calls, and the last visit, in August, I never even got to see a doctor.
My breathing is becoming worse. In the evenings my nose feels completely blocked, and almost any odors causes breathing difficulties. Also, what happens when my tongue becomes completely paralyzed?
How do I get help from a doctor who knows how to handle these als problems?
My breathing is becoming worse. In the evenings my nose feels completely blocked, and almost any odors causes breathing difficulties. Also, what happens when my tongue becomes completely paralyzed?
How do I get help from a doctor who knows how to handle these als problems?