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Only 42 years old, with 2 young kids. Talk about dagger....
Only bright spot was the neurologist told me I have slow progression (its relative, but the progression is linear). My new home will be GWU ALS clinic (have to visit every 1-3 months). I have been on these boards in one form or another for 10+ years (used to be called PotomacTerp on the old boards). I hope to be here for another 10!
I see that ALS is getting a lot of attention this week due to Steve Gleason and O.J. Brigance which is good since this is a terminal disease and there is no cure at this point. FDA did put out news today that they will conduct a hearing on 2/25 to determine best way to get regulated drugs to market (i.e fast track)
All I have to say is live for today, don't take anything for granted, and hug your kids if you have them, you never know when doing that simple task will be taken away, that is what I will be doing!
I'm really sorry to hear this. I have ALS in my family and I'm terrified of it. I hope medical science catches up to this one.
I am so sorry to hear that. We are all crossing our fingers for a breakthrough.
Heartbreaking. Good luck, man.
I love your outlook and thanks for sharing. Good luck with everything going forward.
My wife fell asleep watching the game with me. I could easily have been annoyed that she didn't see Wells almost dagger FSU. But now I'm just glad she's asleep in my arms. Even if Snaer just did that.
Life is precious. Please continue to post!
“Route 1, where everybody meets.” ~Nick Faust #5
I don't know what to say. Prayers for you and your family. They are making medical breakthroughs all the time. Keep the faith.
Wow. Kind of put things like the Terps loss in perspective. Really sorry to hear.
Hang in there, and definitely don't lose out on any time with the kids.
Damn dude, sucks. Good luck
Just booked Alaska cruise for this Fall, going to Vegas this summer, going to both WWE events in March (don't laugh LOL), buying tickets for MD games bball/fball
Shit is still new to me so kind of still in denial I think...
This post was edited by TortugaGrande 13 months ago
stay positive and good luck
What made you get checked out in the first place? Just a routine doctor's visit? Did something not feel right?
Good luck with everything - you and your family will be in our thoughts. And definitely stick around here - you may not have posted much, but I bet more people "know" you than you realize. I know I do.
Spring 2012, I started to notice that my right right arm was becoming weaker (had trouble lifting my 6 yr old on my shoulders), then during summer my right arm and shoulder started losing muscle mass. In the fall, with it not getting better (thought I just needed to lift weights/workout) went to see neurologist, he then also noticed the twitching.
2 months of tests (EMG's, MRI's, bloodwork), got the news last week. No marker for ALS, it is basically a diagnosis of elimination.
Only 30K people get this disease each year in US, I "win" this, but can't win when I play mega millions and powerball, go figure!
I will definitely being posting more moving forward and being less of a lurker...
Very sorry to hear this. Brutal disease. Your outlook is amazing though, so impressed.
Go away, KA!
oh dear. I'm so very sorry.
I'm sorry to hear about this. Wish you all the luck in the world going forward.
Live it up right, my man. 3, 5, 10 years is still a long time. Thousands of days!
Make it count, and best of luck! Let me know if you ever need anything...tickets, tailgate, drugs...er, I mean, yeah.
Very sorry to hear this and best of luck.
I have a client, 42 yr old black female, pharmacist, she developed a severe headache at work 2 weeks ago, drove herself home, started vomiting, her BF drove her to the hospital, 2 days later she's diagnosed with MS. I saw her at the National Rehabilitation Hospital yesterday, she can't walk, she couldn't sign her name without help. They are unsure of the prognosis at this point but I know others with MS who are highly functional and live long lives, but still - WTF??? Who knew the fucking 40's were so dangerous?
Good luck to you. I wish you nothing but the best. Thanks for sharing.
Wow. This is NOT roomy!
Everyone is going to say I'm sorry and whatnot, and understandably, but I hope you fight like hell and stay positive.
Something I saw on one of the Gleason interviews, I think Real Sports, was that he videotaped messages for his kids to see as they get older. Might be something to consider doing.
Good luck man. Happy that you'll be posting more!
Good luck to you, Potomac. We are a community, and we'll be here in every way we can to support you.
"It's just so hard," Greivis said. "It's my heart, my love. Maryland made me who I am."
Prayers for you, MS. My mom was diagnosed with ALS about six and a half years ago, and we have been blessed in that while she has deteriorated on some fronts (mostly speech and ability to walk), she has remained remarkably stable in other areas and she is still her same old self, so no two people's ALS is the same, particularly when, as you say, there's no real marker for ALS (and as a result, the contours of the actual disease are fairly fuzzy).
Youre inspiring. Thanks for sharing and never give up fighting.
Don't ever start feeling sorry for yourself and try to stay positive. Live your life and love every minute of it.
Sadly, I can relate to this as well. My wife was diagnosed with MS a couple of years ago (in her thirties, and after having been diagnosed with thyroid cancer a few months before - that was not a fun year). That definitely sounds like a classic MS attack. The good news is those are almost always temporary (though temporary can mean several weeks or more) and MS drugs these days are pretty good at preventing new attacks. It's still a real challenge to live with, but MS is a lot more manageable than it used to be.
Very sorry to hear that. Wishing the best for you in your treatment.
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