Muscle MRI and ALS correlation?

nck

New member
Joined
Dec 27, 2024
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2
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Diagnosis
09/2024
Country
US
State
UT
City
LAYTON
Hello -
I am working on getting diagnosed for progressive weakness. I am 37 years old. I have had some progressive muscle weakness but in the last 2 years has progressed significantly. The only twitching that bothers me is my forehead and eye lids. I am a mental health therapist and so often I'm with clients all day talking. More and more I find I'm having trouble either forming a word or making it come out. I have to stop and like think hard and force my mouth to move it out right. I had an EMG that indicated myopathy. I was referred for an MRI and the MRI showed severe atrophy of the spinal region, hips, and thighs. I look like wagyu beef throughout all of my muscles hips down and on my stomach (those were the only places imaged). The radiologist said to confer with neuromuscular disorder like ALS. This got me into a neurologist/neuromuscular specialist at the University of Utah. My neurologist does not think it's ALS based on the EMG but a neuromuscular disorder. He was convinced it's limb-girdle muscular dystrophy. I completed the invitae comprehensive neuromuscular test and it came back with two possible variants that neither have been documented as causing issues (a POLG variant and SYT2 variant). The comprehensive panel is for muscular dystrophy, myopathies, and mitochondrial disorders. I am scheduled for a muscle biopsy January 7th.

My question is - for ALS.... did anyone else have a radiologist make this suggestion before being diagnosed with ALS? Did your muscle MRI look weird ? And did anyone have a specialist misdiagnose a muscular disorder instead of ALS.
 
Muscle mris are not commonly part of the als workup.

The emg looks very different for myopathy than als. I expect the radiologist either did not see the emg report or less likely but possible is unaware of the differences

It sounds like your neurologist is proceeding appropriately. Trust them as they have examined you and have all your test results
 
Thank you for your reply.

Sorry. I mis wrote. The radiologist said corelate for *central nervous system disorder... not neuromuscular. It just made me wonder if other people have had similar MRIs with central nervous system disorders.

Either way. I hope the specialists would know a difference. I am having a hard time having faith in practioners these days. It was just such a bold thing to suggest!
 
My husband had a muscle MRI that showed non-specific changes that could be ALS-related, but as you know an MRI cannot diagnose ALS. So it was merely supportive.

A muscle biopsy was considered and rejected as it would have been be skewed by his pre-existing myopathy, essentially. But the MRI can help determine the best biopsy site so that may be one way that it was used.

Agree with Nikki, follow out the diagnostic process.
 
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