Awa5555
New member
- Joined
- Sep 14, 2018
- Messages
- 7
- Reason
- Learn about ALS
- Country
- US
- State
- Colorado
- City
- Denver
First off, I want to thank you all so much for the invaluable wisdom so many of you have shared here. You have helped so many (including me) through this disorienting process, and I really can’t thank you enough.
This is my first time posting, and I feel like I have nowhere else to turn. My grandpa (who is essentially a father to me) was told at the Mayo Clinic that he is likely in the early stages of ALS (no diagnosis). He has had two EMGs, both abnormal but nonspecific, the last showing unchanged nerve conductive findings from the first EMG except the findings have progressed to the peroneal (fibular) CMAP. The EMG show a “disorder of anterior horn cells or other axons affecting the cervical, thoracic, and lumbosacral segments” which support ALS. He has had widespread fasciculations for six months as well as feelings of weakness (though not the clinical type of weakness explained in the sticky - though the doctor confirmed elements of “weakness” during his exam). After the exam, the doctor told him the likely diagnosis and referred him to an ALS center.
What I don’t understand is why they aren’t ruling out other problems - mainly his spine. A few months prior to the onset of his symptoms (which began as widespread fasciculations), his poor posture became very pronounced. He went to a massage therapist who manipulated his spine so much that it was straight again, then poof, three weeks after the massages he had twitches all over his body. He has had one MRI of his cervical spine, which indicated moderate spinal stenosis, but no other parts of his spine have been examined. They told him that his symptoms couldn’t be related to his spine, because both sides of his body would be affected equally if that were the case, and that’s not what the EMG shows. Plus a PET scan pointed to ALS (which showed mild dementia).
I told my aunt we should get a second opinion, and she scoffed, “And you think anyone’s better than the Mayo Clinic?” I just think there are other things that need to be ruled out before we launch to ALS. Am I wrong in doubting this likely diagnosis, or is this the medical field’s way of preparing you for the worst? Feeling very lost and confused. Thank you so much for any feedback. God bless.
This is my first time posting, and I feel like I have nowhere else to turn. My grandpa (who is essentially a father to me) was told at the Mayo Clinic that he is likely in the early stages of ALS (no diagnosis). He has had two EMGs, both abnormal but nonspecific, the last showing unchanged nerve conductive findings from the first EMG except the findings have progressed to the peroneal (fibular) CMAP. The EMG show a “disorder of anterior horn cells or other axons affecting the cervical, thoracic, and lumbosacral segments” which support ALS. He has had widespread fasciculations for six months as well as feelings of weakness (though not the clinical type of weakness explained in the sticky - though the doctor confirmed elements of “weakness” during his exam). After the exam, the doctor told him the likely diagnosis and referred him to an ALS center.
What I don’t understand is why they aren’t ruling out other problems - mainly his spine. A few months prior to the onset of his symptoms (which began as widespread fasciculations), his poor posture became very pronounced. He went to a massage therapist who manipulated his spine so much that it was straight again, then poof, three weeks after the massages he had twitches all over his body. He has had one MRI of his cervical spine, which indicated moderate spinal stenosis, but no other parts of his spine have been examined. They told him that his symptoms couldn’t be related to his spine, because both sides of his body would be affected equally if that were the case, and that’s not what the EMG shows. Plus a PET scan pointed to ALS (which showed mild dementia).
I told my aunt we should get a second opinion, and she scoffed, “And you think anyone’s better than the Mayo Clinic?” I just think there are other things that need to be ruled out before we launch to ALS. Am I wrong in doubting this likely diagnosis, or is this the medical field’s way of preparing you for the worst? Feeling very lost and confused. Thank you so much for any feedback. God bless.