Trying to find answers to hand issues

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RUSSELLPM

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Hello,
Thank you all for your time. To keep this short I will go right to my concern. My dad was diagnosed with ALS at 73 and passed away at 76, 6 months ago. It started in his right hand. ALS specialist did not think it was familial ALS since my dad was the only person we knew of that had it. No other testing was done on that.

I'm 51 and Jan 2020 I noticed a change in my hand muscle, on back of the hand to the right side between thumb and index finger. I noticed it at first because I am a golfer and had to change my grip as well because of burning and pain. Would get a burning sensation, and hand tightness too. It has continued to shrink, tightness and slight burning when in use. I had an EMG in July 2021 which came back clean and another EMG done Nov 8th 2021 and was told no change, no ALS. I was very happy with that, but the problem is my hand continues to get worse. Muscle between thumb and index finger continues to shrink, have tightness and burn. It has a similar look to how my fathers hand was early on in his process which also worries me. Holding a glass of water my thumb has a pain and slight weakness. I have been taking pictures of my hand to compare over time and a difference can be seen. I see the start on the right hand, the same how the left began over 2 years ago.

My big question is about the EMG/NCS. I had two in 2021, July and Nov on my left arm/hand by ALS specialist in Pittsburgh and was told you do not have ALS, but have no answer to what is going on. Is it possible that the test can be done early, before hand or muscles can be detected of issues? Does it take a certain point to detect ALS? Should I get another test, if so when? How long of a time period does a EMG cover before you should get another?

Thank you again for your time.
 

lgelb

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I'm sorry about your dad.

Most likely is that you have a localized muscle problem secondary to your golfing position and any other repetitive motion with that hand. You might also be extending the problem into the other hand through adjusting your grip, or the positioning issue may relate to both hands. I would see a hand therapist for evaluation and to establish a baseline for monitoring.

In familial ALS, most often onset of the next generation is at a similar age to the last. You are by no means as old as your dad when he had his onset. That, coupled with the two clean EMGs and limited presentation, argues strongly against both familial and sporadic ALS.
 

RUSSELLPM

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Again, thank you for your time. I really appreciate it. I watched what this awful disease does to a person. I feel for everyone battling this dreadful disease. I helped my dad and went with him to some of his ALS visits to the VA.

I know it sounds crazy but the very first time I ask my PCP about my hand was January 2019, before i knew my dad had ALS. The pcp said it's nothing and i let it go until a year later noticed a change in the muscle. It has continued ever since. I want to believe the doctors but I don't understand why the change even since the emg in Nov 2021. Hand gets tight and simply holding a glass of water I feel discomfort and slight weekness in the thumb, index finger and muscle between. Sometimes the forearm burns to the elbow now, but that has just started the past few days.

I tell myself you were seen by ALS specialist, had an emg, you don't have it. But what I feel, the change in my hand and the resemblance to my father's hand keep me thinking negative.

Thank you
 

lgelb

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The best way to let go of ALS is to find out what, if anything, is really wrong, and what you can do to make it better. Thus, the thought of hand therapy.
 
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