RUSSELLPM
New member
- Joined
- May 3, 2021
- Messages
- 7
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Penn Township
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.
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.