mikef22
New member
- Joined
- Apr 4, 2014
- Messages
- 4
- Reason
- Learn about ALS
- Country
- US
- State
- GA
- City
- Atalnta
Sorry if this is the wrong place to put this but I need help.
Recently, I've noticed that I have oropharyngeal dysphagia, especially with dry cereal and chips; I have to tuck my chin against my chest to swallow those foods. I also noticed that dry food -- particularly cereal -- has been accumulating on my cheeks and in between my gums, suggesting muscle weakness.
I've had a clean soft tissue CT scan ruling out obstruction or malignancy. I also have recently started taking anti-anxiety medications which have done wonders in relieving my anxiety but very little in relieving my symptoms. The only place left, really, is a neurological problem, which, from what I've been told, may point to bulbar onset ALS.
I have an MRI scheduled in May (I guess they're trying to rule out brain cancer) and right now am trying to get a modified barium swallow scheduled with my ENT.
Doctors are still assuring me that it's unlikely that this is ALS, but I can't help but shake the feeling that they're just saying that until that have a definite diagnosis, considering they have no evidence.
I'm a 23-year-old Hispanic male. I'm honestly not too concerned about dying -- I've been pretty suicidal and depressed throughout most of my life; however, I do have a significant equity stake in a business that I started and is succeeding and a larger stake in another business that is run by a very prominent VC, has multiple investors and private capital, and has a projected valuation of $50 million in 18 months.
I know that sounds really convoluted/unbelievable but it's true.
Anyway, I want to be around long enough to grow this company so that I can leave my equity stake to family. My question is, if I do have onset bulbar ALS at 23-years-old with my symptoms having just started a month ago, how long do I potentially have to live? How long can I work for? How long will I be ambulatory? I understand that all of this is a little case-by-case, but the only studies I've been able to find involve 68-year old ladies.
Could any docs/users link me to a study or provide me with at least an anecdote of someone in my shoes?
Thanks, Mike
Recently, I've noticed that I have oropharyngeal dysphagia, especially with dry cereal and chips; I have to tuck my chin against my chest to swallow those foods. I also noticed that dry food -- particularly cereal -- has been accumulating on my cheeks and in between my gums, suggesting muscle weakness.
I've had a clean soft tissue CT scan ruling out obstruction or malignancy. I also have recently started taking anti-anxiety medications which have done wonders in relieving my anxiety but very little in relieving my symptoms. The only place left, really, is a neurological problem, which, from what I've been told, may point to bulbar onset ALS.
I have an MRI scheduled in May (I guess they're trying to rule out brain cancer) and right now am trying to get a modified barium swallow scheduled with my ENT.
Doctors are still assuring me that it's unlikely that this is ALS, but I can't help but shake the feeling that they're just saying that until that have a definite diagnosis, considering they have no evidence.
I'm a 23-year-old Hispanic male. I'm honestly not too concerned about dying -- I've been pretty suicidal and depressed throughout most of my life; however, I do have a significant equity stake in a business that I started and is succeeding and a larger stake in another business that is run by a very prominent VC, has multiple investors and private capital, and has a projected valuation of $50 million in 18 months.
I know that sounds really convoluted/unbelievable but it's true.
Anyway, I want to be around long enough to grow this company so that I can leave my equity stake to family. My question is, if I do have onset bulbar ALS at 23-years-old with my symptoms having just started a month ago, how long do I potentially have to live? How long can I work for? How long will I be ambulatory? I understand that all of this is a little case-by-case, but the only studies I've been able to find involve 68-year old ladies.
Could any docs/users link me to a study or provide me with at least an anecdote of someone in my shoes?
Thanks, Mike