Still no answers for left hand/arm

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RUSSELLPM

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Lost a loved one
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Hello, My father had ALS and passed from this horrible disease Nov 2022 at the age of 74. I Watched him struggle every day and fighting. I pray for everyone battling this illness and know what it does to you. I am 52 and have had left hand the arm issues since spring 2020. I have seen and read stories of people who had normal EMG when experiencing the symptoms they had, and a doctor to diagnose the disease.

I remember my fathers hand and what he described he felt early on and it is worrisome that is seems similar.

On my left hand/arm is my issues. I have atrophy between my thumb and index finger coupled with a burning and slight weakness from the same area. Goes from index finger into the back of hand and wrist in the muscle between index finger and thumb. Same burning and weakness is felt in forearm and bicep has a dull burning feeling and weakness. Doctors have said it looks slightly smaller but not atrophy. I have taken pictures over the years and you can see the difference. My hand is not the same and has been digressing over the past few years. When I use it can feel the weird uncomfortable feeling from the atrophy area.

Doctors just tell me arthritis/tendinitis I had several EMG’s on left upper only since Mar 2021. All were normal except the last one a week ago. First time something abnormal but was told not enough to mean anything.

Per the doctor,
ELECTRODIAGNOSTIC IMPRESSION:
1. This is a normal study.
2. There is no evidence of a diffuse neuromuscular disorder such as motor neuron disease.
3. There is no evidence of left cervical radiculopathy.
4. There is no evidence of left median or ulnar mononeuropathy.

COMMENT: These normal findings are unchanged from his prior study approximately 1 year ago.

SUMMARY: All sensory and motor nerve conduction study data are normal. Concentric needle EMG was performed throughout the left arm. The left abductor digiti minimi had one large motor unit potential that by itself is a nonspecific finding. Otherwise, the remaining EMG data are normal as listed in the enclosed table.

Yes, it is comforting to be told nothing is wrong, but something is. I feel it everyday. It’s been getting worst since 2020. All doctors seem to think nothing of what I’m experiencing and I feel lost and ignored.

It scares me that it has just gotten worse and with no answers that leaves ALS as a possibility to me when my father had it and I have no explanation as to what is going on. Feels like it’s just a wait and see what happens next.

Thank you for letting me discuss and write my thoughts. I pray for everyone on this forum.

(prev threads here and here)
 
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One large MUP scarcely makes it an abnormal study.

You say it's comforting to see all these normal EMGs, but you don't seem very comforted. I think you know that if your dad's ALS were familial it would be very unusual for your age of onset to be so much younger, and as pointed out in one of your earlier threads, FALS onset in the 70s would be very unusual as well. And I think you know that serial normal EMGs going back to 2020 speak for themselves.

Since arthritis or tendonitis seem to be in the differential, I would see a rheumatologist, orthopedist or physiatrist (rehab specialist) -- whatever your PCP's exam suggests would be best.

Your dad would not want you to worry unnecessarily, but to live the best life you can. So if you can't control these concerns, there are counselors who can help.

Best,
Laurie
 
Thank you for your reply.
I will reach out to a orthopedist. My PCP has has nothing.
I already saw a rheumatologist dec 2022.

These weird pain, numbness, slight week feeling in muscles are concerning. Left hand, bicep, chest and left shoulder blade. Sometimes similar feeling in calf or hamstrings too. Just wish I know what it was. My brother had Tay-sacs along with my dad having ALS. Don’t feel right and I how did a few years ago.

Thanks again for your input!
 
The feelings you describe on your left side also suggest the possibility of a bed, sofa, car seat, and/or work chair that is not supporting you adequately, or where you are staying at times in a weird position. So that could be something to explore.
 
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