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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!
 
Re: Well I didn't see THIS coming...

Jeff glad you found our forum, and I truly hope it is not ALS, but if it turns out to be that, the people are wonderful on here, and very helpful.
 
Re: Well I didn't see THIS coming...

Welcome aboard, Jeff!

Well, it sounds like you've become quite a mess but the good news is, there is still more testing being done which means you may not have ALS.

Your symptoms and there onset seem to be irregular for motor neuron disease, a little to close together in my opinion but then again, I'm just a regular idiot at the other end of a computer keyboard.

Here's hoping the EMG points to something kinder and gentler.
 
Re: Well I didn't see THIS coming...

Jeff,
Crossing my fingers for you! I hope they find something treatable and curable. Good luck next week. If it turns out to be ALS, we're all here for you.
 
Re: Well I didn't see THIS coming...

Sorry you have cause to be here but glad you found us. I hope your 2nd opinion finds somethig treatable rather than ALS. But if it is ALS then this is the place for you. We're all doing this together.

PALS (people with ALS) and CALS (our wonderful caretakers) will answer any questions you may have to the best of our ability, offer comfort if you want it, will be your friend if you so choose. BUT, lets concentrate on the present.

No matter what, you're the same person you always have been. Life is an evolution. Nothing stays the same. It's life. In the mean time, we'll be sending good thoughts your way Toots. The EMG isn't a pleasant experience but not that bad. Try to stay upbeat through all this business. It makes it easier for you and for the people that love you. You sound good.

{{{{HUGS}}}}
 
Re: Well I didn't see THIS coming...

Jeff,

Sorry to hear you may have ALS but I just wanted to give you a" heads up" when you go to your next appointment. Please ask your neurologist about the NP 001 and DEX clinical trial now recruiting. Have heard very good things about both and you have a very short window to apply for clinical trials.

Good luck.

Trixie
 
Re: Well I didn't see THIS coming...

Jeff,
Wait until the emg's. It might be something else. In the meantime, your among friends.
Susan
 
Re: Well I didn't see THIS coming...

Welcome aboard, Jeff!

Well, it sounds like you've become quite a mess but the good news is, there is still more testing being done which means you may not have ALS.

Your symptoms and there onset seem to be irregular for motor neuron disease, a little to close together in my opinion but then again, I'm just a regular idiot at the other end of a computer keyboard.

Here's hoping the EMG points to something kinder and gentler.
Zaphoon,
HA! Well from one keyboard idiot to another, thanks.

Yeah, things seemed close together to me too, but today sucked the wind out of my sails more than all the other issues combined. Carried two 12-packs of soda cans from the store to my car and then into the house. Didn't notice anything odd, but then while cooking a few minutes later I was spinning the spice rack (at eye level) for about 2 minutes when I had to quit. One, I couldn't find the ground coriander and two, my arms felt like they weighed a ton. Heavy feeling lasted only a few minutes but came back again later after I was bracing my arms on a chair while my daughter rubbed my back. Whatever this thing I have turns out to be, it is evil and nasty!

Gonna be a crazy ride...
 
Re: Well I didn't see THIS coming...

Keep us posted Jeff. Do you have anything to help you relax?
 
Re: Well I didn't see THIS coming...

Keep us posted Jeff. Do you have anything to help you relax?
Ms. Pie,
A great God, a great wife & 4 great kids! Oh, and some really good Italian wine for extra kick.

We're not speculating, but we are talking this through and that helps me "let it go" as much as possible.
The long-term worst-case scenario I can deal with, but the speed of the problems is alarming. Look forward to the EMD & RNS (boy, my life must be boring!) and letting the doctors do their thing.

Thanks for asking, too! This is a helpful place, and that coming from a guy who has never posted on a Facebook, twitter or blog in my life!
 
Re: Well I didn't see THIS coming...

Good Luck with your test! Hopefully, you will be able to come back and tell us that we were fun, but you won't be joining our little group. Thoughts and prayers go with you.
Janis
 
Re: Well I didn't see THIS coming...

jeff, hope it's all for naught and you get healthy real quick. My main concern is you seem to have the right sense of humor and cheeky attitude to fit right in here ;) Hope you visit even if you get good news
 
Did he specifically test for Gullian-Barre CIDP, and Myesthenia Gravis? Those two sound possible, too--especially the later, as your symptoms seem to worsen with exercise?

There is a blood test for it--but other testing, too. I could be wrong, but I don't believe facial drooping is usually seen in ALS. Hopefully, they will find something fixable for you!
 
Did he specifically test for Gullian-Barre CIDP, and Myesthenia Gravis? Those two sound possible, too--especially the later, as your symptoms seem to worsen with exercise?

There is a blood test for it--but other testing, too. I could be wrong, but I don't believe facial drooping is usually seen in ALS. Hopefully, they will find something fixable for you!
notme,
Thanks. Had a friend in the medical field tell me the same thing this morning!
Was a crazy weekend with the weakness in my arms, and then a long Sunday night... couldn't sleep, neck and shoulders hurt like hell, muscle twitches driving me crazy, and my arms felt crummy, like I'd been lifting weights. Today I just feel tired, but nothing new so that's a plus. More like the twitches or spasms have gone on so long that the muscles in my arms feel like they have not had a break!

Called the neuro but he never called back so I'll wait it out until the EMG and nerve testing next Monday.

I feel bad coming on here 'complaining' about my concerns when so many good folks here have real problems. I am grateful for the insight and help you all are giving. As I mentioned before, it helps to know what to ask and how to listen! And a small army of folks are praying for you all.
 
Jeff, it's no fun when your body starts to go into a funk and then stays there. When I was told I probably had PLS, I had an epiphany - my days of feeling good would never be the same. Not a day has gone by that spasmodic cramps have left me alone. Oh, cry me a river!

You just learn to ride the bus a little differently as time goes by.:)
 
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