Intermittent "deadness" in arms

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Cammarak

Active member
Joined
Sep 24, 2014
Messages
77
Reason
PALS
Diagnosis
06/2014
Country
US
State
NY
City
Williamsville
Hey! Anyone have a similar problem--I have fasticulations in my left arm. Every once in awhile, my arm seems to go dead--becomes useless--sometimes for days on end, but then it comes back (usually all at once) and is usable again. I noticed increased fasticulations last night and today my arm is useless. I live in WNY where we are getting POUNDED with snow--although I'm a few miles north of the worst of it--and I just had to call in sick to the school where I teach because I can't drive one handedly on the ice. I'm wondering if anyone else shares this symptom and if so, how you deal with it?
 
I think fasics are as diversified as progression in MND's. That being said, I have had significant fasics in my left triceps for about a year and a half. These have been consistent, and I have had a sensation of the muscle being fatigued, similar to doing a triceps exercise to exhaustion. Last week the fasics stopped abruptly, and the inner head of my left triceps now feels flaccid and almost like it is gone.
Fortunately, the outer triceps seems intact though somewhat atrophied. I still pump iron 3 times a week, but can't use near the poundage that I used even two years ago, and have to do most exercises seated. Exercise is my way of fighting this monster, although some times I feel like I am involved in a gun fight with a plastic knife.
 
when it started in my arms. some days it seem like i didn't have the strength to do anything with them. then other days they would be good but my muscles in them would be jumping most of the time. one day i woke up and they was about gone. arms got smaller and the jumping was going away. the thing that kept the dr's going on it. that it was in both arms. one arm is a little stronger then the other. not much. they never came back. i ran service calls for about 35 years for the kcks and kcmo area and i was not through yet till that one day. i tried to drive some but it was not good. i had to have my son start it and put it in gear for me and i was able to turn the wheel a little at a time with my fingers. not good. the last day i tried to drive i was trying to make the last day of are season racing. on the way to the track the truck broke down on me. it was a good thing. i didn't need to be behind a wheel at that point anyway.

one day driving the next day to never drive again.
 
That's a big fear of mine! Driving has been dicey for awhile because of the rigidity/spasticity of my feet and lower legs, but I e still been able to do it--I also managed occasionally with one arm. But with Ice and snow I know I'm risking not only my life but also other innocent drivers out there. If they take driving away, I'm done as far as work goes. No work no decent insurance. Kiss the house goodbye. Kiss my family's comfortable middle class lifestyle goodbye, too. I think the stress from those fears makes it even worse!
 
it didn't stop at just the driving. it takes about most of everything you do with your hands and arms. it is hard but things works out in it's own way. at this point there is not much you can do but all you can why you are here. like setup up for the end. als don't stop it just keeps taking till the end. it's been really hard here, took all my savings and pad the house off. it was good i did that. what ssd is giving us now. we would of done lost it. the light bill is over taking us now. we might be turned out this week. you can pay then what you can. never been put in this fix before. work is are life till it's taken away. im just wanting to see how much more there going to bleed on me.

the lags are another thing that went on me after the arms but that's another story. that i wish i wasn't in.
 
Cammarak, I just have to say - have an accident and injure or kill someone else, if you haven't declared your diagnosis then you won't be insured and your family could lose everything anyway and you will have the guilt on top ... If you feel it is too dangerous to drive on ice, then how do you think you would be able to react if there was suddenly an urgent situation on the road in front of you without ice? I know, truly, it's a terribly hard thing to give up. If you had to stop driving is there no way someone else could get you to work and back? just sayin

On the other note. We say emphatically to people on DIHALS section that symptoms do not come and go or get better. That isn't exactly how it is, and yet it is.

I will try to explain. If you think of how you are on your very best day, then yes you may fatigue yourself, or it may be extra cold or some other influence and the next day you may be far worse. After a day or 2, you may 'get better', returning to how you had been on your previous best day, maybe nearly returning to there. BUT, you won't go to even better than you had been on that best day, let alone suddenly have all your strength back.

It's too hard a fine point to make to those who are in anxiety, but it is true. Just like me who does not have ALS/PLS, I have some days I have better energy and can do more for longer. Some days you will be worse, but the next a little better. The big thing is you won't 'get better' and you will decline (sorry I hate saying this stuff). So a month or year later, your very best days will be at a decline from your very best day in the past, and your worst days will be worse again still.

In the winter, Chris would find that of a morning when it was most cold, he may not be able to do anything at all with his hands. A few hours later, they had improved a lot and he could hold a cup again. By the summer, even on his good days he couldn't hold a cup, ever. So even though his strength went up and down a bit when he had use of his hands, they still continued to decline. Being rapid ALS what Chris experienced was all much faster than you should have, but the analogy is still the same, he just had it happening in a short time frame.
 
Hi Cammarak,

Ive noticed that overusing muscles cause that heavy feeling and increased fasciculations. Anyway, it sounds like you are taking a big risk to self, family, and drivers commuting to work, even on clear roads. Have you considered car pooling or even applying for SSD? It's not a full time salary, but it's something. Also, I don't know if you have a pension or retirement savings, but they can often be accessed early for people with chronic conditions. I would bet your family would settle for a simpler lifestyle rather than having you risk your life on the road. Good luck and please don't send snow this way! We already have enough to make it treacherous getting to the car.
 
>Good luck and please don't send snow this way! We already have enough to make it treacherous getting to the car.

I've pretty much given up driving for everyone's sake ... maybe I'll take it up again when my progression reverses itself. But if that were to happen, buy stock in beef as I will eat every steak in tx!
 
Believe me, I realize that I'm probably not safe on the road--I only drive to work and back now(36 miles each way) and nowhere else. I've told every doctor I've come into contact with that I'm not a safe driver anymore--no one ever bats an eye at that! I don't know what to do to convince anyone anymore. I see my neuro tuesday --I'm going to have to demand his attention this time. It's just too hard. All this. Too much.
 
Oh Cammarak, my heart cries for you. But if you quit work and take SSD, think of the perks:
1. More time to make memories with your family.
2. Teaching costs money so now you can live on less. ( I know I spent hundreds each year on things for my classroom, donations, wardrobe, transportation costs, etc. )
3. Less stress- progression may slow down. All of us educators understand the incredible stress teaching gives you- even though it is the most rewarding job possible!
4. Time to find agencies that can aide you and your family in getting equipment, providing home health aides, etc.
Please consider taking SSD and opening a new chapter. And I am so sorry you have to worry about all this. Hugs to you. Donna
 
I'm so sorry too on how hard it all is. I hated writing those things about driving, but I truly think that it is important.

Donna makes good points about the benefits of stopping work while you still have some reasonable functionality to enjoy your family.
 
I'm sorry--I seem to have forgotten myself for a minute there! I re read my post and I sound like a wimp--I'm okay. I can do this thing--this is the thing I'm doing! It gets a little depressing when it snows relentlessly and gets dark at four thirty. But I know I'm far from finished here and I'm way better off than so many others. I'm usually a pretty positive person and I think that the right attitude goes a long way in this kind of fight and I'm always impressed when I read other people's comments that seem positive and upbeat. I got this now.
 
it's not wimping it's letting it out. so if you feel like letting it all out you do it. like what was said to me. it's all new to you right now. sorry for being so hard but ones you get over that part. then maybe you can get on with what life you do have left.
 
Wow Cammarak, anyone with ALS/PLS who vents about how crap it all is could never sound like a wimp. You guys face the most incredible odds every day.

Please update us on what decisions you make. None of them are easy decisions sadly.
 
Hi again,

One more thing..you don't need a Dr. to put in writing that you are an unsafe driver to apply for SSD, if that's what you were referring to. When I told the J.Hopkins Dr. Last year that I was finding it difficult to work, he didn't give me any advice t all, but as soon as I had his diagnosis I applied for SSD and got it two months later. You just submit the forms and medical records, etc.
Kathy
 
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