Searching for a Diagnosis and suggestions

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Ohiogirl

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Mar 3, 2016
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DX MND
Country
US
State
Ohio
City
Hamilton
Hello everyone. . just wanted some feedback from someone who has experienced the ALS journey. I started having fasciculations mainly in my legs about three months ago. I was referred to a neurologist and had several testing done. I have an elevated CK level that is chronic and I had an abnormal EMG in my legs. All other tests have been normal (MRI, other bloodwork, lumbar puncture). I am scheduled for a muscle biopsy next week. I have ataxia, weakness and fatigue. I know walk with a cane and live on the couch due to my condition. Has anyone else on this site experienced these problems? I know I have a motor neuron disorder but not sure which one. Any help is appreciated. Thank you.
 
I'll offer my naive and inexpert two cents: I'm not sure that other people's stories should carry much weight toward defining what kind of MND you have. Seems to me that many people with several MNDs would have those symptoms. Perhaps somebody smarter can give a more satisfying answer.
 
Why was a muscle bx recommended? Usually not indicated for an MND dx unless your CK is very high and you showed myopathic patterns on the EMG. If you post the EMG notes, we could be more helpful.
If your EMG was significantly abnormal and you have a MND, it most likely is ALS. But you may not have MND at all, so let's not jump the gun.

Best,
Laurie
 
Hello, I was told that the EMG showed significant demyelination in the nerves of my legs. CK levels were not really high but chronically elevated. Thanks.
 
Demyelination sounds like you should be looking elsewhere. In ALS we have denervation Why did you think MND? What did the doctor say exactly after the EMG?
 
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