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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Caregivers | Last Active: Sep 30, 2023 | Replies (107)
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@gizzmo

Hi I need help with some questions My husband at the age 65 started with his hand starting to shake went he would use them. At rest they were good. The Neurologist said Essential Tremors. 5-22 they put him on Primidone 150 mg 6 a day that was not helping so was going to add Gabapentin 300 mg. Rick said no to any more meds he didn't feel good and did not help. He went back 7-22 he had lost so much of the shoulder girdle of his muscles . He was having a hard times making his arms and hands work from weakness. Did a EMG showed some weakness . The Mri , Ultra sounds and blood test all came back good. 10-22 now they are treating him thinking its ALS he is taking riluzole 50 MG tablet. His legs muscles are good , balance and walking are all fine. Does not fall or stumble. His arms are very weak but work over head . But not while he is in the shower. He cant reach his head or pick them up above his shoulders. Not sure why wondering if anyone else had that? They said it should not come and go like that Als is always there. His are triceps and biceps are the ones that are the ones that are failing. The doctors aren't sure why his symptoms are so different and they don't meet the criteria for ALS. This all so scary for me and read everything I can . Any help or answers on this strange disease I wold appreciate. Thanks

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Replies to "Hi I need help with some questions My husband at the age 65 started with his..."
Colleen Young, Connect Director | @colleenyoung | Dec 30, 2022

I'd like to add my welcome @gizzmo and help you connect with other members like @722jo @allegro @julesa @bethclardy22 @laurahquayle11 along with @hopeful33250.

You may also be interested in this related discussion that @gcranor started with helpful posts from @jenniferhunter @rivermaya34 and @larryh123

– Neuromuscular Testing and Waiting for ALS confirmation https://connect.mayoclinic.org/discussion/neuromuscular-testing/

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Jennifer, Volunteer Mentor | @jenniferhunter | Dec 30, 2022

@gizzmo As I read your description about muscle loss in biceps and triceps, my thoughts go toward a cervical spine issue. If there is some instability in the spine, so that the alignment changes with different body positions, it can create a situation where symptoms can be intermittent. I am a spine surgery patient, and I had the same muscle loss in biceps and triceps because of spinal cord compression because of a collapsed C5/C6 disc and bone spurs. I had 2 mm of one vertebrae slipping past the other, so that essentially made my spinal canal smaller when that happened when there wasn't any fluid space left around the spinal cord. If it was aligned well, the symptoms got better. I was seeing a physical therapist who was working on me which made it better until the next muscle spasms caused the bones to move again. You had mentioned an MRI. Was that done to look at the cervical spine or something else?

Have you consulted a spine specialist? Froedert does have some good doctors. I have taken my elderly mom to doctors in their health care system and also to a spine neurosurgeon at Aurora in Milwaukee. She didn't have surgery. It was a consult about a spine compression fracture. Spine specialists also do full spine standing X-rays and compare that to sitting or lying down X-rays to check for changes in spine alignment.

I did have a spinal fusion decompression surgery, and since then, I have gotten muscle back that I lost; not all of it, but a lot of it.

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