When neck muscles fail

[APL55]

When your neck muscles fail, does it cause compression on the spine, trying to figure out if that might be causing the numbess in my arms and the heavy feeling in my legs, or is there a problem with all the poping and grinding in my neck, don't mean to sound like a broken record, but this afternoon it has gotten really bad.

 

[joelc]

My neck muscles are 95% gone and I don't have those problems. Not sure what to say. Maybe someone else can offer something better.

 

[LornaDoone]

How do you keep your head up? My PALS has been complaining of being tired sitting up and her neck getting weaker. She will often lean forward and her head will drop.

 

[joelc]

My head drops hard if my wheelchair is tipped forward. My head stays up by tipping my wheelchair back and it rests on the headrest. We have to be careful that we get the angle of the wheelchair right and my back centered.

 

[Pat Paine]

I am getting fitted for a soft collar to help with this and the strain too.
Pat

 

[serenade]

APL55
See a chiropractor! I had the same feeling, numbness, caused by my neck, hips and back being out of whack.

 

[Blubear]

Oh yes, I agree with that! If your neck is out of whack it will cause all the feelings Serenade listed, and dont forget tingling in the fingers as well, and extreme weakness in one arm. I dont have ALS but I do have a mess of a neck. Chiropractors help, and even getting a steroid injection into the c-spine can help. I went to have an EMG done once time and he had me put my arms out straight, palms facing in and then he told me to push outward against his hands. It was the weirdest thing, every single time my right arm would just flop right over. No control at all! That time the shot did the trick. Also, about the neck brace. From my personal experience, and my dads, those look really comfortable like your neck would get a rest or something, but they really arent that comfortable. Mine actually makes my neck ache something terrible. If the neck brace you get doesnt help there is a thread on here on how to do a homemade neck brace that is more comfy for PALS. Just look under the search button at the top.
Best of luck,
Kari

 

[Danijela]

I love Joel's pragmatism, on each and every 'issue'. Way to go. Dani

 

[abbas child]

Allan, as I understand your diagnosis--I forget the name--(other than ALS), which causes the nerve covering to be destroyed, I strongly urge you to do nothing until mid January when you go to Hopkins. Your problem, as stated in your diagnosis, is very dangerous according to ALyoop, a Neuro nurse who did understand what you're said to have wrong.

Any outside person, even a good Chiropractor, could create more damage. I'll try to hunt down your ALS diagnosis.

Much sympathy and concern,
Ann

"myelomalacia of the spinal cord in your neck"

 

[rose]

I agree, stick it out until you're seen at Hopkins. I really think you're going to get some answers when you're there. They'll definitely not let you get away until you've had enough evaluation done.

 

[APL55]

A chiropractor is out of the question, there is one I have seen, but he won't touch my neck but has been very helpfull with xray's. Today my fingers on my left hand are getting harder to use, and the left arm feel's like it cramping at times, my right side isn't as bad except both arms feel like they have about 20lb of weight on them. My neck feels like there is something bulgeing or cramping up. My legs have gotten tight makeing it hard to walk. If I sit up for too long I feel myself getting numb above the waist, what really gets me is that as my brother would say, is that since I don't do a thing all day but lay around, how can I be getting worse everyday. Hope I last long enough to get some answers.

 

[abbas child]

Allan, I really do feel for you. I hope you have something passive to do while you wait. I think you'd be the exception to the "never watch a soap opera" rule I self impose. Anything to get your mind distracted while being passive would be good... and just ignore the criticism. Time... it goes so slowly when we are waiting for something we want (Hopkins trip and some answers!).

Ann

 

[Phil M]

I'm in the same boat. The best nonmedication things I have is a home neck traction machine, and its possible to make a home made one.
And a headmaster collar that you can find, and purchase online. Good luck!

 

[APL55]

Ann, are you nuts? Me watch a soap, not with so much other junk on tv, I'm watching repeats of things I watched 3yrs ago LOL. Everything feels like its getting heavier, but I can still move, but I'm at a crawl as far as walking, just don't want to fall. Been avoiding the stairs. Wondering if there might be a link between my trunk problems and how swollen my right foot, leg, my left use to get real bad, but it looks almost normal. The only place I get any twitching is my right ear and eye, with spasms in the back of my neck when I lay down. Hope I'm able to walk when I go to Hopkins next month, if not maybe I can rig a sail to a skateboard and pray we get the wind we're getting today on that day.

 

[abbas child]

Allan, you must have more tv channels... I have public tv and CBS. Not much to watch, but I'm cutting swaths through Netflix. If it weren't so dangerous, a sailing skateboard to Hopkins would be terrific, but maybe not gentle enough for your safety. It's very windy here, too. I can just "see you" in a balloon, gently going to Baltimore.

I hope you can keep avoiding the stairs. My swelling in the feet has never, ever disappeared unless it's first thing in the morning and I'm still in bed. Allan, be safe...