Noel707
New member
- Joined
- Aug 18, 2024
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
I tried to update on original post but it was closed.
Continuing to have progressive weakness, however my appointment with the neuromuscular specialist seemed a wasted of time. He walked in with his mind apparently made up about me after a chart review. He was very dismissive stating “you do not have ALS” and was not interested in looking at the videos of twitching areas (they are not constant) nor assessing the areas of atrophy in my hands, shoulders, and feet. He tested strength and had notations by the muscle testing grades for certain muscles (the ones most affected such as left hand, left foot and right quad) that it was a 5/5 but there was “reduced voluntary efforts”. This infuriated me as a patient because I wish I was faking. I’d give anything to have my life back.
I asked for a repeat EMG as it’s been 5 months since the last one, possibly NFL testing, maybe muscle biopsy, anything for answers and he declined. Even though I did not complain of cramps and he saw no fasciculations, he ordered a repetitive nerve stimulation saying I probably had BFS/CFS. After another 5 week wait, I had that done last week and like I figured, it showed nothing. However I was hoping the RNS on the traps would give some data to at least point them in the right direction. They tested the left side first and then spoke to the attending who requested the right side be completed as well. The technicians were having issues and had to perform the testing several times on the right. One technician held my arm and the leads in place and the other was at the computer. They were talking amongst themselves but seemed concerned/confused about the results.
I received the official results and the spinal accessory RNS was “contaminated by movement and contraction artifact.” This does not make sense to me. The specialist called and said good news, the results are normal no BFS/CFS. Respectfully, I’ve know this is not just BFS. I told him about my progressing weakness and he essentially told me there was nothing else he could do for me. He recommended I return back to my regular neurologist for further questions.
It’s extremely frustrating as a healthcare professional myself to see such dismissive and incompetent behavior. Duke seems to have this prestigious reputation but I beg to differ. So essentially, I’m at a loss as I continue to lose strength with no help on getting answers.
Continuing to have progressive weakness, however my appointment with the neuromuscular specialist seemed a wasted of time. He walked in with his mind apparently made up about me after a chart review. He was very dismissive stating “you do not have ALS” and was not interested in looking at the videos of twitching areas (they are not constant) nor assessing the areas of atrophy in my hands, shoulders, and feet. He tested strength and had notations by the muscle testing grades for certain muscles (the ones most affected such as left hand, left foot and right quad) that it was a 5/5 but there was “reduced voluntary efforts”. This infuriated me as a patient because I wish I was faking. I’d give anything to have my life back.
I asked for a repeat EMG as it’s been 5 months since the last one, possibly NFL testing, maybe muscle biopsy, anything for answers and he declined. Even though I did not complain of cramps and he saw no fasciculations, he ordered a repetitive nerve stimulation saying I probably had BFS/CFS. After another 5 week wait, I had that done last week and like I figured, it showed nothing. However I was hoping the RNS on the traps would give some data to at least point them in the right direction. They tested the left side first and then spoke to the attending who requested the right side be completed as well. The technicians were having issues and had to perform the testing several times on the right. One technician held my arm and the leads in place and the other was at the computer. They were talking amongst themselves but seemed concerned/confused about the results.
I received the official results and the spinal accessory RNS was “contaminated by movement and contraction artifact.” This does not make sense to me. The specialist called and said good news, the results are normal no BFS/CFS. Respectfully, I’ve know this is not just BFS. I told him about my progressing weakness and he essentially told me there was nothing else he could do for me. He recommended I return back to my regular neurologist for further questions.
It’s extremely frustrating as a healthcare professional myself to see such dismissive and incompetent behavior. Duke seems to have this prestigious reputation but I beg to differ. So essentially, I’m at a loss as I continue to lose strength with no help on getting answers.
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