Jeff Long
Distinguished member
- Joined
- Jul 21, 2011
- Messages
- 254
- Reason
- PALS
- Diagnosis
- 10/2011
- Country
- US
- State
- NC
- City
- Raleigh
A few weeks ago I couldn't even spell ALS, and now I'm confronted with the very likely possibility that he (or she?) is my newest permanent companion. I liked ignorance better! And I was better at it too.
So why am I wasting your time rambling on here? Because I stumbled into this website while "googling" every possible combination of 'ALS', 'symptoms', and 'what the heck?!'
I've read about two zillion posts and appreciate the variety; some calm reassurance, some harsh "get over it and get on with it", and much, much useful info from folks who are living in my potential new world. So, no matter your style here, thanks! The night of my last appointment, I woke up terrified at the thought of what may come, but the sanity and information I've seen here have lessened my worrying and been very helpful. I am retired from the military and found an abundance of helpful info concerning programs available for veterans dealing with ALS. Again, thanks.
I have not been 'officially' diagnosed but the neuro has been candid with me about my situation. A couple of months back I noticed some shakiness in my dominant hand, slurred speech and drooping on my face. Great... ugly AND droopy!
Saw the GP who did a brain MRI, which was cleaner than clean. Neuro ran a gallon's worth of blood tests, again all good. In the meantime, my tongue morphed into a small, fat, pink and moving blob. Looks like a wavy little waterbed! Other new symptom is a violent shaking of my arm, shoulder and upper body when I flex my arm. Not that I spend a lot of time standing in front of the mirror flexing my arm, but it's a great conversation starter at tailgate parties! When not flexi-shaking, it just twitches and tingles all the time. Mildly annoying but scarier than a second Obama term!
EMG and some nerve tests next week, then on to Duke for an EMG on my tongue and the dreaded 'second opinion for confirmation.' Now that ought to be a real treat!
Can they do that tongue thing if I'm drunker than Cooter Brown so it won't hurt (or I won't care!)? Okay, not really.
So, no matter the result I've been reassured by the information I got here, and I am going forward better prepared to ask the right questions and understand some of the answers. With any luck, I'll wake up tomorrow and realize that spicey food gives me bad dreams but I'm pretty sure that won't happen!
Blessings to all, you're doing a good service here!
So why am I wasting your time rambling on here? Because I stumbled into this website while "googling" every possible combination of 'ALS', 'symptoms', and 'what the heck?!'
I've read about two zillion posts and appreciate the variety; some calm reassurance, some harsh "get over it and get on with it", and much, much useful info from folks who are living in my potential new world. So, no matter your style here, thanks! The night of my last appointment, I woke up terrified at the thought of what may come, but the sanity and information I've seen here have lessened my worrying and been very helpful. I am retired from the military and found an abundance of helpful info concerning programs available for veterans dealing with ALS. Again, thanks.
I have not been 'officially' diagnosed but the neuro has been candid with me about my situation. A couple of months back I noticed some shakiness in my dominant hand, slurred speech and drooping on my face. Great... ugly AND droopy!
Saw the GP who did a brain MRI, which was cleaner than clean. Neuro ran a gallon's worth of blood tests, again all good. In the meantime, my tongue morphed into a small, fat, pink and moving blob. Looks like a wavy little waterbed! Other new symptom is a violent shaking of my arm, shoulder and upper body when I flex my arm. Not that I spend a lot of time standing in front of the mirror flexing my arm, but it's a great conversation starter at tailgate parties! When not flexi-shaking, it just twitches and tingles all the time. Mildly annoying but scarier than a second Obama term!
EMG and some nerve tests next week, then on to Duke for an EMG on my tongue and the dreaded 'second opinion for confirmation.' Now that ought to be a real treat!
Can they do that tongue thing if I'm drunker than Cooter Brown so it won't hurt (or I won't care!)? Okay, not really.
So, no matter the result I've been reassured by the information I got here, and I am going forward better prepared to ask the right questions and understand some of the answers. With any luck, I'll wake up tomorrow and realize that spicey food gives me bad dreams but I'm pretty sure that won't happen!
Blessings to all, you're doing a good service here!