Bamamom
New member
- Joined
- May 13, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- AL
I am supposed to have a repeat EMG in a couple of weeks and am having cold feet/ thinking about canceling it. Really wondering if it would be better not to know for as long as possible. On the other hand, if it is negative, then I will know that for sure.
I am 57. 3 years ago, I had what I thought was a tremor in my left index finger. I was concerned it would interfere with my work. I saw my PCP and then a neuro who did a DATscan for Parkinson's, bc my father had it, and it was negative. I told her at the time that it felt like the shaking muscles do in a hard exercise, but she was pretty sure it was a tremor. 2 years ago, she said the muscle between my index finger and thumb was atrophied and had fasciculations. I had not noticed this... the shaking had pretty much stopped, but it turned out that was because the muscle was weaker. I was unable to do things with my pincer grasp on that side. I changed jobs so to one which doesn't require fine motor skills.
She wanted to do an EMG, but when I asked if there was any way to fix the muscle, she said no, it probably got injured somehow... so I said I wasn't going to waste the money, lol.
Then my thumb on that side got a weak muscle in the palm-- really weird, flat and kind of mushy-- so I agreed to the EMG last fall. She thought I had both carpal tunnel and ulnar tunnel maybe. No pain or numbness. But the NCV was normal. The EMG showed chronic denervation/ reinnervation in those 2 muscles and she thought it must be a radiculopathy, so I had an MRI of my neck. I have a big deductible, so this was getting pricey. It was stone cold normal.
She asked the EMG specialist if it could be ALS because these muscles are the "split hand" ones. She is not a neuromuscular specialist. They said there was no acute denervation, but that I should have another EMG in 6 months and this time do 4 extremities, because of the particular muscles involved. I managed to drag that out to 8 months but it is coming up.
Last month, I had a follow-up exam with her and she said I have hyperreflexia. My right arm jumped all the way up to my shoulder when my wrist got tapped. In the past month, I noticed what I thought was maybe a rotator cuff issue on the right, and I got a PT referral. It turns out I have several weak muscles on the right side, both leg and arm-- the other side from my hand. My right foot lifts up at 3/5 and that foot occasionally scuffs the floor a little. My shoulder forward flexion is 3/5, and my pincher strength on both hands is 2 on the machine (supposed to be 11?). My right quad is atrophied and 3/5. I don't see how that could have been happening without my noticing it, so now I wonder if it was just always like that. The PT asked if I had a brain tumor, and I'm like lol, no, I'm sure not. Anyway, she said it was not normal, but who knows if I was just born that way? I've always been a klutz.
I don't think this could be ALS because that seems like a random kind of pattern, and it also seems really slow compared to what I've read. I feel like I am going to spend all this money to learn nothing. And if I do have it, I am really not sure I want to know until the last possible minute. I mainly wanted to know if it was something that could be fixed.
Maybe this is an irrational attitude on my part, wanting not to have a diagnosis. I am wondering if any of you wished you had not found out until later, or if there is an angle I am not thinking about. Also, I would like to know if you agree with me that this does NOT sound like ALS. Thank you so much.
I am 57. 3 years ago, I had what I thought was a tremor in my left index finger. I was concerned it would interfere with my work. I saw my PCP and then a neuro who did a DATscan for Parkinson's, bc my father had it, and it was negative. I told her at the time that it felt like the shaking muscles do in a hard exercise, but she was pretty sure it was a tremor. 2 years ago, she said the muscle between my index finger and thumb was atrophied and had fasciculations. I had not noticed this... the shaking had pretty much stopped, but it turned out that was because the muscle was weaker. I was unable to do things with my pincer grasp on that side. I changed jobs so to one which doesn't require fine motor skills.
She wanted to do an EMG, but when I asked if there was any way to fix the muscle, she said no, it probably got injured somehow... so I said I wasn't going to waste the money, lol.
Then my thumb on that side got a weak muscle in the palm-- really weird, flat and kind of mushy-- so I agreed to the EMG last fall. She thought I had both carpal tunnel and ulnar tunnel maybe. No pain or numbness. But the NCV was normal. The EMG showed chronic denervation/ reinnervation in those 2 muscles and she thought it must be a radiculopathy, so I had an MRI of my neck. I have a big deductible, so this was getting pricey. It was stone cold normal.
She asked the EMG specialist if it could be ALS because these muscles are the "split hand" ones. She is not a neuromuscular specialist. They said there was no acute denervation, but that I should have another EMG in 6 months and this time do 4 extremities, because of the particular muscles involved. I managed to drag that out to 8 months but it is coming up.
Last month, I had a follow-up exam with her and she said I have hyperreflexia. My right arm jumped all the way up to my shoulder when my wrist got tapped. In the past month, I noticed what I thought was maybe a rotator cuff issue on the right, and I got a PT referral. It turns out I have several weak muscles on the right side, both leg and arm-- the other side from my hand. My right foot lifts up at 3/5 and that foot occasionally scuffs the floor a little. My shoulder forward flexion is 3/5, and my pincher strength on both hands is 2 on the machine (supposed to be 11?). My right quad is atrophied and 3/5. I don't see how that could have been happening without my noticing it, so now I wonder if it was just always like that. The PT asked if I had a brain tumor, and I'm like lol, no, I'm sure not. Anyway, she said it was not normal, but who knows if I was just born that way? I've always been a klutz.
I don't think this could be ALS because that seems like a random kind of pattern, and it also seems really slow compared to what I've read. I feel like I am going to spend all this money to learn nothing. And if I do have it, I am really not sure I want to know until the last possible minute. I mainly wanted to know if it was something that could be fixed.
Maybe this is an irrational attitude on my part, wanting not to have a diagnosis. I am wondering if any of you wished you had not found out until later, or if there is an angle I am not thinking about. Also, I would like to know if you agree with me that this does NOT sound like ALS. Thank you so much.