CALS has a PALS question

[trying to stay positive]

Hi. I hope it's ok that I post here even though I am a CALS, not a PALS. My husband was diagnosed in August of this year, although his first symptoms showed up almost 2 1/2 years ago. My question is about progression. My husband's firsr symptom was weakness in his right wrist and hand. Now over 2 years later, he has weakness, atrophy, cramps and twitches in both arms and hands, shoulders and back. He also tells me that his stomach muscles are feeling weaker.

OK, finally, here is my question. Since he started with limb onset, does this mean that his legs are probably next as opposed to his swallowing and/or breathing muscles? I know that it is different for everyone, but I was wondering if it usually went to all the limbs first when it starts there. I guess I am afraid of when the swallowing and breathing difficulties start. Well, ok I AM SCARED MINDLESS of when that starts. Thanks for any help!

Linda

 

[cheryilyn]

Linda,
i don't think that there is any way to tell what will happen next in this disease. I have bulbar onset and lost my speech first and some swallowiing ability. I got a feeding tube shortly after diagnosis. Then on to my legs and arms. Next i am sure will be a vent as my breathing is going down now. every one here will tell you a different progression. You just have to take one day at a time.

 

[Michelle C.]

My husband has ALS and I read somewhere that if it starts in one limb, it will move to the other limb, then extend to the same side of the body that it started in another limb. Make sense?

My hubby started in his right foot, then moved so his left foot was affected, then his right hand and now his left hand is starting. It is proving true in our case, but he is also getting much thinner everywhere except his middle.

 

[Al]

Mine started in limbs annd 4 years later no bulbar symptoms. Touch wood.
AL.