Can you loose trunk muscles before you loose the use of your legs

[APL55]

Over the last couple of days my trunk,arms and neck all seem to gotten worse very quickley. My left arm & hand are almost useless, I can still grip and hold onto things,my right isn't that bad. my left side seems to worse than the right, both sides are numb and tingle. I have no problem walking or going up stairs except my gate is a little off. I have't fallen (yet) so is it possible to loose your trunk muscles before your leg? My condition changes every day so I'm a litle worried.

 

[Danijela]

Hi,

the answer is yes. At least that is the case with my partner. He started with left arm, right followed and now it is mostly his upper body (the core/trunk) that is affected. He finds the stairs hard because he can not grip the handrail (due to severe hand atrophy), and since his core has been affected it is hard to pull himself up the stairs.

On flat surfaces he walks with a stick, because balance seems to be affected, again due to loss of core muscle strength.

D

 

[abbas child]

Allan, I wonder if your trunk loss could be from the other (neck) issue. The numbness and tingling sensation seem to point away from it's being ALS related, at least this early. I think, therefore, that this is your other problem manifesting in this way. Just my thought.

Oh, I thought I'd add that I do have much trunk loss... I'm like cooked pasta through the trunk....

 

[APL55]

What do you mean by cooked pasta Ann? I feel like weight or pressure and my arms feel like they are burning at times which isn't as bad since I up my dose of prednisone, which one of my Dr. told me to try and he's not a neurologist,before then I would wake up at night and had a hard time getting back to sleep.

 

[abbas child]

What I mean is that if I bend over in my wheelchair, someone has to push my shoulders back up--I cannot lift my torso at all. I am limp. The weight from my head I do feel, Allan. My head weighs a ton. Generally speaking, burning pain is nerve pain. While I had that briefly on the side on which I lay, the burning pain went away after I stopped lying on my side. Allan, that happened after several years of loss. I may well be wrong, but the fact that you have serious problems in your neck along with this nerve-like pain in your arms (where I am presuming the nerves leading out from your neck go) means that your pain isn't from your ALS.

Have you looked at the Sticky https://www.alsforums.com/forum/do-i-have-als-als/13132-good-article-classification-etc.html which alyoop posted? It may help--or I may be remembering incorrectly the area of your damage and where in your body that damage would correspond with. If I'm off track, Allan, I apologize.

Ann

 

[abbas child]

I can no longer open the file in that article, Allan. When I last read it (a few days ago), there was a diagram of a body and the Upper and Lower Neuron Symptoms occurring. You might do a search (outside the forum) on the nervous system, find a diagram and locate where your neck problem is... and where the nerves leading from it end. That way you can check on the likelihood of the relationship. Any news yet on a Hopkins appointment?

 

[Miss]

Your condition sounds very similar to my husband's. He has little to no use of his left hand and arm. the right arm is limited and he has a bit of grip in his right hand. His speech is heavily affected. He has begun to experience problems with his trunk. Breathing difficulty, and balance problems. He is just beginning to notice a problem with his left leg. This is probably the hardest thing about ALS. You cannot predict it's pattern.

 

[abbas child]

I,of course, agree totally with Missy, as well as with Dani, Allan. The concern or question for you is where does "myelomalacia of the spinalcord" occur in your body? That problem is what makes your symptoms so difficult to figure out. Alyoop told you in a different thread that nerve (burning) pain isn't a diagnostic sign for ALS... which I realize you also have. But, I should have just left it with "yes, you can have trunk muscle loss at any point" in ALS, the short answer. :-? Sorry.

Missy, I am so sorry your husband's disease is progressing like this. You must feel as though you're spinning out of control at times. XO

 

[Ladyinn]

I started with balance issues about 6 years ago -- then my left arm began atrophying and losing strength two years ago, and my speech became stilted and slow turning to slurred at night or when extremely tired. One year ago I was diagnoseded with ALS. Since then things are moving more rapidly.

My right arm began losing strength and mobility about six months ago - at the same time I began having trouble turning in bed or getting from a reclining position to a sitting position (trunk muscles?). Within the last month I have lost almost total mobility in the right arm and my head feels like it weighs 200 pounds sitting on my neck which is floppy! I'm noty sure if there is much change in my speech buty I do know that talking is wearing me out and I prefer to not engage in dialogue.

This morning my legs feel stiff as a board from my hips thru my knees... both legs. I feel like I move as Frankenstein or his "mrs."

Things seem to progress so differently for all of us -- thank goodness for this forum and the help I have gained from those experiencing similar losses whenever they may have them in their journey.

Hugs to each of you.

 

[hope2000]

Hi everyone I'm new 2 site but not new 2 als

 

[Al]

Ann, have you updated your Adobe Reader? (free) I was able to open the article.

AL.

 

[abbas child]

Thanks Al, I was able to open the article (and save it this time) downstairs on the PC. I need an update on the laptop's Adobe Reader, and can't manage to make the update work. I'm far too dependent on Phil's help with this stuff. Full disclosure... when I mess up, I can really mess up, which doesn't make him happy... go figure.:idea::shock:

 

[APL55]

Ann, I dowloaded the article thanks, I guess my biggest problem with all of this is that it's happening so fast, It's not like I'll do something or move a certain way and then a week later I'll be worse, it's the next day. Now I might get up at night to go to the bathroom, but I'll feel ok, but when I get up at 6 to start taking my meds, I really feel it. Some times it lets up a bit, then my mind starts writing checks by body can't cash (LOL). Then I have a Pulmonologist and a Neurosurgeon who are not totally sold on my ALS diagnosis, so I feel like a YO-YO. I did call the lady at Hopkins today and my stuff has be given to one of their Dr. and she said she would be back in touch. Hope there is something left of me when I get there. Thanks too all.

 

[Alyoop]

I am taking a holiday from the forum, but your situation is a real worry. You are certainly stuck in a difficult situation. With 2 specialists no sold on the ALS theory.

If you have myelomalacia of the spinal cord in your neck, then it can indeed cause absolutely all the symptoms you are describing, including the breathing difficulties. I am not a Dr and not saying you do not have ALS, but there certainly is this rather interesting Differential diagnosis that points to all your symptoms including the sensory issues that are not common in ALS (at an early stage).

What really worries me heaps, and why I have responded is that fact that it is progressing quickly. If it is in fact caused by your neck issue then you need to be checked out quickly. Is it possible for you to ring your neurosurgeon and talk to him about your symptoms ASAP.

I am not sure why you have damaged to your spinal cord. Did you have a fall, or have bad disc disease? Please can you get it seen to promptly?

Really worried Aly

 

[APL55]

Aly, I had a MRI done about 3wks ago and my neurosurgeon said he would get in touch with my neurologist and discuss what he found, I waited about a week and sent my neurologist a email and asked him about it, he said he hadn't seen anything and he would get on it monday and would let me know, that was a week ago,no response as of yet. Needless to say I'm a liitle fedup with it all, so I'm holding out for visit to John Hopkins, which is one of the best in the country. The biggest problem with ALS is nobody really knows nothing, but I would listen and take advice from the people on this fourm than most of these so called doctors.