Bedenbaugha
Member
- Joined
- Nov 15, 2012
- Messages
- 13
- Reason
- Learn about ALS
- Country
- US
- State
- Ga
- City
- Douglasville
As I sit here pondering what to say, I wonder if anyone but me will read it. I've decided to start this because I've read a number of posts and blogs and can't find much on the initial symptoms, progression, and eventually, diagnosis of a MND. I don't want to forget, and if it turns out I do, I want others to gain insight from it as well.
I sit typing on the iPad, really the best mechanism these days since my typing is a bit muddled. I've been touch typing for well over a Decade, but now it requires me to think about every finger movement, so this is easier. Frustratingly slower, of course!
But no matter. I continue to twitch in my left shoulder and arm.. Still have weakness there, but always have since a neck surgery 5 years ago.. So maybe it's a little worse this month.. I'm not comfortable driving with that arm anymore, and I've always been a left handed driver, so that's annoying, as you can imagine.. I still try to keep it up in the 10 o'clock position, but well, it gets tired and eventually flops into my lap, darned 1 hour commute! The facis are interesting too, sometimes I sit there and think of it like waiting for the baby to kick- I used to watch my belly the same way..kick (twitch), kick (roll), kick (spasm).. Kind of a cool party trick if you ask me.
The facis started in my left deltoid. No worries there, it's my neck, right? I have degenerative disc disease and am a 38 year old trapped in the body of an 80 year old..(even now moving slow like an old fogey- just getting out of the chair means 1) grasp arms with hands, 2). Slowly push up to standing and make sure nothing is going to give out before letting go 3). Shaking out stiff spastic leg that refuses to move form a minute 4) take tentative step 5) realize I can still walk, albeit a little lopsided. But im getting older as i said.. Things move a bit slower. And then i go on about my day. I don't like to sit a lot, as you can imagine.. Unless I know I'm staying there for a while- like watching a movie.
So didn't think twice about a few twitches, all par for the course of being old. Then they started in my trapezius. Well dang, my neck must be getting bad again.. Doesn't hurt more than normal, but really, I can't think of any other reason I've turned into a human popcorn machine. Kinda funny in fact.. If it happened while i was talking with someone, with a pen in my hand (im a hand talker) the arm would jump and my pen would fly across the room... Laugh at myself a lot for throwing pens at people inadvertently!
Woke up a few weeks later to a twitching thumb... Well, that's kinda cool, look, it has a life of its own! Got really bad for a few days- another party trick, then stopped.. Not working quite right, I grab things between my fingers now because I broke a few glasses when I thought I had a firm grip and they tumbled to the floor. Oops.
Facis weren't done though.. Spreading to my forearm... REALLY annoying at first.. After about a week I noticed them less.. They are still there, like little worms and babies, kicking up through the skin, but not as forceful as they once were.... That arm is still weak, but I suppose it would be if a nerve was pinched for this long..
Went to the ortho for some hip pain...found I had very brisk reflexes, but nothing on X-ray. Did an MRI (I'm certainly no stranger to those, with my neck surgery) and the lumbar and sacral area and cord are just fine- another symptom of getting old.dang getting old sucks.. Talked with them about these horrible headaches I was waking up with and the night sweats- time to go see the neurosurgeon about my neck again...ugh. (turns out he no longer takes my insurance)- put that one off.. If it starts hurting, then I'll go.
There is more of course- my fight with the hair dryer , the buttons on my kids clothes, the convention trip in DC, which has a pretty big convention center where I finally gave up trying to walk and sat and thought to myself "oh crap"... And then asked for the nearest taxi stand...the fact that I now take the elevator at work when I used to take the stairs- because I'm an out of shape weenie, the pirate leg run that no one should have to be subjected to... But fact is, my arm is tired even from using the iPad, so I'm going to take a break..
Do I have ALS? Dunno. Hope not... I'm still convinced its just all a pain in the neck (literally)..
I sit typing on the iPad, really the best mechanism these days since my typing is a bit muddled. I've been touch typing for well over a Decade, but now it requires me to think about every finger movement, so this is easier. Frustratingly slower, of course!
But no matter. I continue to twitch in my left shoulder and arm.. Still have weakness there, but always have since a neck surgery 5 years ago.. So maybe it's a little worse this month.. I'm not comfortable driving with that arm anymore, and I've always been a left handed driver, so that's annoying, as you can imagine.. I still try to keep it up in the 10 o'clock position, but well, it gets tired and eventually flops into my lap, darned 1 hour commute! The facis are interesting too, sometimes I sit there and think of it like waiting for the baby to kick- I used to watch my belly the same way..kick (twitch), kick (roll), kick (spasm).. Kind of a cool party trick if you ask me.
The facis started in my left deltoid. No worries there, it's my neck, right? I have degenerative disc disease and am a 38 year old trapped in the body of an 80 year old..(even now moving slow like an old fogey- just getting out of the chair means 1) grasp arms with hands, 2). Slowly push up to standing and make sure nothing is going to give out before letting go 3). Shaking out stiff spastic leg that refuses to move form a minute 4) take tentative step 5) realize I can still walk, albeit a little lopsided. But im getting older as i said.. Things move a bit slower. And then i go on about my day. I don't like to sit a lot, as you can imagine.. Unless I know I'm staying there for a while- like watching a movie.
So didn't think twice about a few twitches, all par for the course of being old. Then they started in my trapezius. Well dang, my neck must be getting bad again.. Doesn't hurt more than normal, but really, I can't think of any other reason I've turned into a human popcorn machine. Kinda funny in fact.. If it happened while i was talking with someone, with a pen in my hand (im a hand talker) the arm would jump and my pen would fly across the room... Laugh at myself a lot for throwing pens at people inadvertently!
Woke up a few weeks later to a twitching thumb... Well, that's kinda cool, look, it has a life of its own! Got really bad for a few days- another party trick, then stopped.. Not working quite right, I grab things between my fingers now because I broke a few glasses when I thought I had a firm grip and they tumbled to the floor. Oops.
Facis weren't done though.. Spreading to my forearm... REALLY annoying at first.. After about a week I noticed them less.. They are still there, like little worms and babies, kicking up through the skin, but not as forceful as they once were.... That arm is still weak, but I suppose it would be if a nerve was pinched for this long..
Went to the ortho for some hip pain...found I had very brisk reflexes, but nothing on X-ray. Did an MRI (I'm certainly no stranger to those, with my neck surgery) and the lumbar and sacral area and cord are just fine- another symptom of getting old.dang getting old sucks.. Talked with them about these horrible headaches I was waking up with and the night sweats- time to go see the neurosurgeon about my neck again...ugh. (turns out he no longer takes my insurance)- put that one off.. If it starts hurting, then I'll go.
There is more of course- my fight with the hair dryer , the buttons on my kids clothes, the convention trip in DC, which has a pretty big convention center where I finally gave up trying to walk and sat and thought to myself "oh crap"... And then asked for the nearest taxi stand...the fact that I now take the elevator at work when I used to take the stairs- because I'm an out of shape weenie, the pirate leg run that no one should have to be subjected to... But fact is, my arm is tired even from using the iPad, so I'm going to take a break..
Do I have ALS? Dunno. Hope not... I'm still convinced its just all a pain in the neck (literally)..