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azhiker

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Joined
Aug 4, 2016
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5
Reason
PALS
Diagnosis
07/2016
Country
us
State
IA
City
Cedar Rapids
Could it be something else?
Diagnosis: Motor neuron disease, unspecified
Diagnosis: Other specified disorders of muscle
Diagnosis: Disease of spinal cord, unspecified

My 3rd EMG Report (each result worsening):
"EMG nerve conduction study was abnormal. It showed electrophysiologic evidence of a chronic neurogenic process in the right L5-S1 myotomes with ongoing denervation in distal L5 and S1 innervated muscles. These findings can be seen in low motor neuron diseases or in motor axonal diseases. The changes in the cervical and thoracic segments were subtle, and therefore the patient did not fulfill the revised El Escorial Diagnostic Criteria of Definite ALS. Therefore, we recommended a follow-up EMG in four to six months to determine progression of neurogenic changes."

In short, I have no wasting in my weak right leg. I can't run at all (a year ago I was running 5K and 10Ks) or walk very well, but I can still bike. I am wobbly though, due to some vertigo symptoms.

1st noticeable symptoms were a right foot drop during running and weakness.

My fasiculations are mostly in my legs, but I can sometimes feel them in my lower abdominal area and back (lying on my back in MRI machine, I can really feel them)
 
Were the EMG's done by a neuromuscular specialist or a general neuro?
 
Are there more detailed notes/tracings/numbers on the last EMG? Did they test an arm in addition to a leg? From the note, it appears that ALS is the provisional dx, but this "revisit in a few months" thing is not a substitute for ensuring a real differential was/is done. And if it is ALS, there is no reason to delay the clinical dx so you can get benefits. We sometimes see neuros stressing over criteria that no payors care about.

You need a 2nd opinion anyway, as we advise for all, so that would be my next move. Was this all done in Iowa City?

Best,
Laurie
 
Are there more detailed notes/tracings/numbers on the last EMG? Did they test an arm in addition to a leg? From the note, it appears that ALS is the provisional dx, but this "revisit in a few months" thing is not a substitute for ensuring a real differential was/is done. And if it is ALS, there is no reason to delay the clinical dx so you can get benefits. We sometimes see neuros stressing over criteria that no payors care about.

You need a 2nd opinion anyway, as we advise for all, so that would be my next move. Was this all done in Iowa City?

Best,
Laurie

The last was done at Mayo Clinic in Rochester.
 
Then I'd seek a 2nd opinion at Iowa, because if it's real, you'll want somewhere closer to receive followup care. There is often a delay in getting an appointment for re-evaluation, so I'd make that call soon, and then bird-dog records transmission, etc. There is a sticky on 2nd opinions up top.
 
University of Iowa has an excellent ALS Clinic. You are close so I would get an appointment there ASAP. Meanwhile, get all your records from Mayo to take with you. Do this even if you are going back to Mayo in 4-6 months (which you should.) I highly recommend two opinions from recognized centers and both these are excellent.
 
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