23-year-old possible bulbar onset -- have survival questions

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mikef22

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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
 
Do a search in the forums for "bulbar progression"

You will be able to read posts about how people progressed over time.
 
Mike, I don’t think anyone on this planet has walked your shoes. I can't wait for clearwaterals take on this.
 
You wrote, ("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.") First, get over yourself.
Then you wrote, ("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.) Second, you inconsiderate --- Third, your first sentence, ("Sorry if this is the wrong place to put this but I need help.") Yes, for you, this is the wrong place and you DO need help. Finally, you wrote, ("Could any docs/users link me to a study or provide me with at least an anecdote of someone in my shoes?) after you wrote, ("Doctors are still assuring me that it's unlikely that this is ALS.") How many more do you need?
 
Dusty, this one took me over the edge. There are members of this Forum who would cry in joy and relief if they were given just 1000th of $50 million dollars. There are members of this Forum with no insurance or means to pay for basic needs struggling with MNDs that have rendered themselves unemployable. There are members struggling and wanting just to see tomorrow and he's already worried about passing on his projected fortunes because his breakfast cereal gets stuck between his cheek and gums! This one may get me booted off the Forum but for this one... I will flame out.
 
>This one may get me booted off the Forum but for this one... I will flame out

I doubt that, Al :). Flame on ...
 
See. Told ya I was waiting for his comments.
 
I believe it would be best for me to somewhat avoid the DIHALS forum. I believe this recent run of Threads which seem to be all too familiar from the greeting, to the paragraphing structure, to the wordage, to the ages, to the symptoms, the mentioning of anxiety (or implication of) and the endings are not real or sincere but are nothing more than created or crafted for response. I believe (my opinion) it is a group or an individual (with friends) who find sick fun from beleaguering this Forum. Maybe it’s coming from a chat room or some other form of acquaintance. Coincidence always has its possibilities… but to a point which I have suspicion has been passed. If not…anxiety and hypochondria amongst young people has gone to epidemic levels. Maybe someone else should "call 'em as they see 'em!" or continue to feed them so they continue to make post after post with no intent of heeding sincere replies of advice from honest members.
 
It's not just food getting stuck to my gums. I have progressive oropharyngneal dysphagia that is beginning to make it difficult to eat foods I had no problem with a few months ago. A CT scan showed no obstructions and my anxiety medication -- while effective in relieving the anxiety -- has not relieved my dysphagia. The only other possible explanation is something neurological.

And yes -- I'm very lucky in respect to the success I've had. My parents were not rich (they could barely afford shoes as kids) but they worked their butts off and pushed me to do well in school, and as result, I was able to attend a top university. From there, I got to meet a lot of people who helped me become very successful at a young age.

So I'm sorry if I sound naive or arrogant or inconsiderate or paranoid or full of myself. The truth is I'm probably all those things -- why? -- because I'm 23. I haven't had the chance to live even half of a full life and now my body might to be going down a dangerous path and, like everybody else, I want it to mean something.

And I'm sorry to all of you. I can't even begin to imagine what it's like to definitively know you have this disease; I never meant any disrespect.
 
>I believe it would be best for me to somewhat avoid the DIHALS forum
>Stop This thread. Stop.

ditto that!
 
Is this a troll thread? If its not; the DIHALS forum is for medical concerns, not how you should place your money and other assets if it against all odds should prove that you have MND.
 
>Is this a troll thread?

what is a 'troll thread'?
 
And to reply to Al's comment about anxiety threads and similar wording;

I believe that young people with anxiety search the web, perhaps for their age and symptoms, and unfortunately, the keywords lead them to this site. So I am thinking it is a domino effect...the more people that post with similar phrasing the more people with similar issues will find their way to this site through google.

I had a pm chat with one of the people here that has been around for quite some time and posted enumerous times, I researched a bit and found what seemed to be a good forum for health anxiety. He is now there instead chatting away with people in a similar situation, so I will recommend it here as well.
 
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