ALS started in shoulders and hips

[NotALS!]

Has anyone had their ALS start in their shoulders and hips? I know it usually starts in the foot or hand but my weakness/atrophy started in one shoulder, then the other and then my hips. Large muscles are completely gone.

I've had speech/swallowing difficulties for years and now my breathing is harder. One neuro says I have ALS and another says I don't. I tested positive for Protomyxozoa Rheumatica and am treating that with antibiotics. I'm still getting weaker, however.

My shoulder weakness started in 2008. It has progressed to my large joints during the past 4 years.

 

[jb63]

Mine started in my right foot, up the rt leg and the left foot and moving up. I noticed some mild rt shoulder weakness which surprised me as I thought it would it my hands first before a proximal region. My hands are strong and flexible. If I hold something like my handbag straight out, my arm drifts down. I don't know if this is typical of progression. I suppose it is possible it is from not using the arms as much, but I'm not hanging any hopes on that.

 

[Alyoop]

Yes, it's a relatively common site for the start of ALS. My Hubby is a neurologist and has had many patients with the first symptoms occurring proximally rather than distally. It's not as common as a distal presentation, but occurs often enough.

 

[pmbenb83]

My husband's started in his right shoulder. He thought it was weakness after shoulder surgery, but then a large section of muscle in his right shoulder blade area was missing. That along with fasciculations and severe muscle cramps started the trips to the neurologists. He was given a diagnosis of ALS after a year of doctor appointments, EMGs, etc.