Going down fast or is it something else..scared!

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APL55

Active member
Joined
Jul 8, 2010
Messages
81
Reason
PALS
Diagnosis
03/2010
Country
US
State
Va
City
Woodbridge
Every morning when I get up I seem to be worse than the day before,not to waste space to see my other post to see what has been going on,the one strange thing I've noticed is that when I get up in the night to go to the bathroom,my symptoms are not as bad,sometimes not noticeable at all,the tightness and heavyness in my chest,arms and hands is quite a bit less, I just realized this 2 night ago,I don't do much of anything except lay in bed all day,except whe I go upstars to get something to eat,tighten bad when I go up the stairs.What am I suposed to do,lay here and do nothing, I know they say everybody is different,but does it happen this fast,just need to know...Thanks!
 
APL55 - sorry to hear about your struggles. I too feel like I'm going down fast...then I read a few posts and count my blessings that I haven't hit bottom yet. Praying for you to get some answers and to be encouraged today!
 
Allan,

The only explanation for your feeling so much better when you get up during the night is that you've slept, and while sleeping have done some "repair". I have no clue as to what, exactly, might be getting the help, but as you've written about your cervical fusion and the doctor thinking you have the next (higher) problem in your neck, I think this is going to be found not to be ALS related. Just my own thought. Have you asked your doctor (the ones who are involved with your cervical problems) about this inability to do anything but to remain in bed?

As for the tightness in getting back upstairs... is it upper body (chest, arms and hands) or your legs tightening up? If the tightening is in your legs, do you happen to know if you have mainly spasticity in your leg--rock hard muscle and painful, or atrophy and weakness?

I'm not sure, obviously, but to me it sounds like the neck problem rather than ALS, Allan.

Ann (my own problems, limb onset, are weakness and atrophy, and I'm very weak when I first get out of bed... but better during the day if I slept well during the night.)
 
Your right, everybody is different. I am more mobile at night, and basicly do everything better at night. I have a hard time doing anything in the mornings.
 
What are mornings?
 
Barry, mornings arrive on clinic visit days!
 
I am very early in my progression, for me I am good in the mornings but as the day goes on and my leg gets more and more tired and I exert more and more energy my limp gets worse, my leg feels dead and I quickly get out of breath. I need much more sleep and rest then I used to.
 
Oh, now I remember! I don't usually get up before 10:30 and then it takes me an hour to get dressed and out of my room. My best time is in the afternoon and by evening I am worn out.
 
Yep mornings are a wasted time.. For this ALS Cramps my style.. It is sure a treat..
 
hello I agree it does feel like sometimes it speeds up,I am sure of it. I know some days I feel almost normal,of course if I don't talk.
but then there are days where you feel how can it get much worse or you make the mistake of thinking how bad it will get. When I am feeling scared or bad I come here to the forum and then I feel better . I know they understand what I am going through . thanks you gugs
 
I do much better in the mornings. That is if I get rest, however tonight I cannot sleep from muscle cramps in my legs and feet.
 
Lori, you spoke my truth... mornings are when clinic days come round. It's always changing, but at this moment, "able to engage" and up are entirely different things. I'm usually up at 8, but still very weak and stiff. By 11, I'm at my peak for a couple of hours. On a great day, afternoons are good. Otherwise, I nap some. Evenings are fine as long as I'm in bed, although typing is awkward.
 
The tightness is the upper body,don't have much trouble with my legs till I stand for a bit,I put away grocerys yesterday and now I'm worse today,but I just can't sit and do nothing,already wasted 3yrs of my life that I won't get back.Oh, as far as the sleeping thing,if I fall asleep during the day sometimes I feel worse,at night I don't sleep all the way through.I don't know how you all deal with everything,you're amazing!
 
Allan, do you have an appointment with the "neck" doctors yet? Your legs I'm thinking are ALS. The upper body sounds like the cervical problem above the fusion. What makes it hard is that we know there ARE sensory things with ALS. With muscle atrophy the joints aren't being supported correctly, and weight on a specific area can cause nerve pain or numbness. It's been in various areas in my own body, so I know it's real. The good news is that I've also had it for months, and then it quit.

Your problem with your neck.... when you had the EMG testing, did any dirty area show on your cervical area? Ask your Neuro when you see him/her. My thoughts have been based on your surgery there, but of course, I have no idea of where your ALS may be other than your legs. I will say, however, ALS doesn't just bombard an area suddenly and in this widespread way you describe with your chest and arms. You bring in groceries and bam, the next day your entire upper body is totally crashed.

Ann
 
Hey Ann, My Neuro called me last Sunday and said he couldn't tell how much damage was done because he didn't have my previous mri,I had it done up here and asked them if their was a way for him to see it,they said the only thing they send him is the report,it took him over a week to get back to me,I was under the impression they had a way to see the disc,but I guess not.I have copys of all my mri's,he said he would set me up for a visit and get somebody to compare both mri's,but I'm gonna try to hold out for Hopkins,as far as asking him any questions;it seem to take forever to get a reply,hopefuly you're right that ALS does'nt bombard (like that word) an area,cause it's realy bad today,might not do a thing tomorrow and see what happens.Thanks!
 
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