I need help, and am new here, thanks

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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
 
EMGs can be abnormal in many different ways. The pattern of ALS is distinctly different than myositis on Emg. A positive Anti CN-1 antibody is not related to ALS and points toward myositis.

I don’t know what you meant by 2 positive images and a positive energy

If you want to share your most recent emg with the identifying information removed you may. We need to see the summary and also the table that has muscles in in down column and fibs, psws etc across to comment more
 
Hello thank you I have been ruled out for myositis despite the elevated anti-CN-1 antibody. And I am a nurse. I also have done extensive research that shows that absolutely that anybody is elevated in patients with ALS. Please send me a link that indicates that is not associated with ALS. I appreciate your help. Thanks so much.
 
I found ONE case study of two people with elevated anitbody and not IBM/ myositis. One had post polio syndrome. One supposedly had a working diagnosis of ALS. Working diagnosis does not sound very definitive This is far from saying it is an als indicator. Again I suggest you share your deidentified emg if you want us to comment
 
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