marygrace
New member
- Joined
- Dec 3, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Bellingham
I’m looking for some help, I have had symptoms (since 2020), of severe muscle weakness in my legs, losing muscle mass and I have upper extremity symptoms. I have two positive images from last month and a positive energy from 2019. Every neurologist has ruled out myositis or any autoimmune disease. I also have an elevated Anti CN-1 antibody and (2) neurologist say don’t have ALS, I have myopathy but don’t know what kind, so I’m being sent back to see the neurologist in Seattle (who initially said I don’t have myopathy, or myositis)., but I do, according to latest neurologist, who is referring me back to him., but I don’t understand and I’m getting progressively worse and I’m having trouble with choking and swallowing as well now how can you have a positive EMGs (4 total) and a positive Anti CN-1 antibody, and have a Neurologist say you don’t have ALS? ? ( I also have 35* scoliosis). Latest EMG positive denervation in the paraspinals, so she ordered an MRI left arm to rule out myositis ( MRI negative for myositis), but showed a tendon tear supraspinatus), and now have to go back to a “more academic setting”… thoughts? Thanks in advance! Mary