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mkboreson

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Joined
Apr 17, 2015
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66
Reason
Learn about ALS
Diagnosis
04/2015
Country
Uni
State
Colorado
City
Pueblo West
We saw the second guy for a follow up yesterday. All the blood work came back good, which isn't a good thing, as you all know. He said there are still somethings to consider, but I could tell that he is not sure where else this could be going. We also got the summary of the third EMG. Can someone interpret it for me? This is what it says:

"This is an abnormal study. There is electrophysiologic evidence of chronic neurogenic changes associated with fibrillation and fasciculation potentials in left cervical myotomes and subtle neurogenic changes without abnormal spontaneous activity in left genioglossus muscle.

There is no conduction block, temporal dispersion or prolonged F-wave latencies to suggest demyelinating neuropathy.

These changes do no fulfill the revised El Escorial criteria of definite ALS. A repeat EMG is four to sixth months could be considered to access the progression of neurogenic changes, if clinically indicated."

Thanks!
 
Oh good lord MK, can't these people speak English!
It would alleviate so much anxiety if they gave us reports in lay mans terms.
Totally not my area, I am quite convinced Atsugi, Laurie, Nikki, Tillie...so many beautiful people here will be able to help.
God bless, Janelle x
 
Lol! Green Queen, that is SO true! I googled the muscles and discovered that genioglossus is the throat muscles, but I'm having a hard time distinguishing between myotomes and dermatomes. All they told us what that it didn't confirm it, but didn't rule it out. Gee, thanks.... Details are important!
 
What you were you were told essentially sums it up. There are some abnormailities in the neck area not enough to diagnose ALS but could possibly go that way if things progress- or not. They can't predict. There was an even less specific finding in the tongue muscle that pretty much could be nothing but because it is close to the other areas of concern bears watching. A follow up EMG in 4-6 months would give time to see if things develop further. Sometimes EMGs improve depending on the underlying disease. Be prepared to be told we just have to wait and see.
It also says they did not see signs that pointed towardss MMN. Revised ElEscorial refers to a set of criteria for diagnosis of ALS. Not meeting them is a good thing. What did the first doctor say? Did he want to schedule follow up EMG? Did he prescribe Riluzole? Did he put ALS as the diagnosis?
 
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A dermatome refers to an area of skin while a myotome refers to an area of muscle.

Not a doctor, but I would read it as:
"The EMG shows evidence of ongoing changes associated with nerves which have become detached from the muscle, causing improper firing in left-side muscles from the head to the shoulders and down the arms to the hands."

I don't know why he mentioned the El Escorial criteria unless he was specifically asked to look for ALS. I see nothing in this study that would indicate ALS. ALS requires widespread, acute and chronic denervation and the study does not show that. Yet. We never know what the future holds.
 
Nikki,
This is the EMG from the day he was diagnosed. The Doc was 100% certain in the morning and we came back for the EMG in the afternoon. After he read this, he came back in and said he is still "fairly certain" it is ALS. I asked him what else it "could" be and he said nothing? He did actually diagnose him as having ALS and started him on Baclofen. He intends to start him on Riluzole on his follow up on May 21. We haven't decided if we are going back. Nothing has come back on the blood tests, but I just don't know if I feel this is enough for a clear cut ALS diagnosis. He's had 3 EMG's in a year with nothing, but this, and they diagnosed him? I'm very confused. Maybe he is just airing on the side of worst-case-senario, but he was also unwilling to run any blood work or consider it could be anything else. Also, the report said his reflexes are a 3. That isn't 100% indicative of ALS either, right?
 
Dusty,
This was the EMG to essentially confirm his ALS diagnosis. The doctor we saw earlier in the day is 100%, based on a clinical exam and 2 clean EMGs that he is in the beginning stages of ALS. My first thread (with the whole story and all his symptoms) is called "Any Insight Appreciated," and it is on the Newly Diagnosed board. We have seen a second neuro in our home town twice and he hasn't confirmed or denied it, but hasn't found anything else on blood tests. We also have an appointment at Mayo in June. Thank you SO much for the input. It doesn't make any sense to me, but I guess that is why I am an English teacher. :)
 
It sounds like there was more on the exam than just 3 plus reflexes? Babinski, hoffman, clinical weakness? The baclofen says significant spasticity to me...he clearly saw something on exam. I am as many here know a big proponent of early riluzole. If ALS is highly likely and it is being offered I would take it. It works better early. That is just not my opinion but it is what top ALS doctors have said to me
 
Nikki,
Can you PM me your email address and I'll send you the report. I asked about Babinski and the second neuro said it was positive. I can't tell on the report from the diagnosing neuro if it is positive. I know that isn't good. The only reflexes that were a 4 were his quads.
 
The report might say on the babinski toes upgoing downgoing or mute. That is considered the more correct way to document it
 
I just sent it. I only see plantar reflexes and it says fl/fl?
 
Not sure fl might mean flexor response which is normal
 
My guess is that it means the plantar reflex was flexion/flexion (normal) as opposed to extension/extension (abnormal), but of the different ways of referring to the Babinski reflex, this is the first time I have seen it this way.
 
Dusty,
Can you give me some questions to ask ABOUT the EMG? We go back to the diagnosing doc tomorrow and I want to make sure I am asking all the right questions. I want to know why he can't have CIDP, IBM, MMN or PLS. I don't know if I am off base with those DDX for ALS, so any help would be appreciated. Anyone else is more than welcome to chime in also. I am so nervous, I could just throw-up. Thanks!

Kelli
 
Were there signs of acute denervation? What signs--insertional activity, fibrillations, positive short waves?
Were there signs of chronic denervation?
What muscles showed signs of both acute and chronic denervation?
Were any of the paraspinals tested? Which ones?
Which myotomes showed denervation?
Is this a pattern of widespread denervation? (ALS is a disease of widespread, acute and chronic denervation.)
Have all other possible causes--radiculopathies, plexopathies, etc.--been ruled out?

That should get him started talking.
"I want to know why he can't have CIDP, IBM, MMN or PLS." Good questions... ask him.

I would also ask what signs in the clinical exam point toward ALS. (Hyperreflexia, weakness, atrophy?)
Good luck!
 
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