New Diagnostic Criteria

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KevinM

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Hi everyone. I believe Nikki touched on this in another thread, but I had a zoom call with my neurologist this morning and he told me that they are doing away with “clinically possible, probable, and definitive“ categories and now will diagnose as “either you have ALS or you don’t.”

The EMG criteria, as I think Nikki said was being used in Japan, has also changed to include fasciculations as “spontaneous activity” and now part of the consideration along with the previous signs: fibrillations, PSW, acute and chronic denervation, multiple muscle groups, etc. He did say that including this does increase the chance of false positives, but not by much.

I may have missed a couple of points, but basically that was his message.
 

Nikki J

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Fasciculation potentials on emg. Not simple fasciculations. And the rest of the emg requirements for acute and chronic denervation and widespread distribution remain as do requirements for significant umn signs. As I have said before I am very glad they are getting rid of the possible probable and definite categories which were always confusing. Apparently the terms were taken from MS criteria that were in place at the tine.

they are called the gold coast criteria. It is worth noting that trials still require El Escorial so far.
 

KevinM

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Nikki, help me understand the fasciculation distinction. Dr. Pulley said if they are observable during the clinical exam, they will be picked up on the EMG.
 

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The criteria are summarized here.
 

Nikki J

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We have countless examples of people who have twitches and yet none are seen on emg. And I believe there is a technical difference between a simple fasciculation even on emg and a fasciculation potential.

I am also confused by the way they wrote the criteria which make it look like if you have progressive weakness and atrophy you can just skip the emg. I asked one of the authors about this in a private conversation and he said emgs are still needed and implied it was worded like that to give a little wiggle room for bulbar cases
 

KevinM

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Interesting. There is no doubt that those with occasional fasciculations often aren’t observed during exam, and aren’t shown on an EMG. For frequent fasciculations, that might not hold true.

And I‘m not sure what a simple fasciculation is, because from what I’ve been able to find in research papers a benign vs. MND fasciculation can’t be distinguished on the EMG.
 

Nikki J

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This implies there is a difference in ALS fps maybe there isn’t a difference other than degree but I know early in my course I was having a research emg on my unaffected leg ( 2 plus years before any symptoms there) and the emg doctor said just one simple fasciculation. It could have been a turn of phrase in conversation but wasn’t called a fasciculation potential in the paperwork either. The examiner was a nationally known emg expert.

i think the yes/ no aspect of the criteria is a huge step forward for future PALS. I do think it is going to be more confusing for undiagnosed / worried and even more than now they will need to believe their doctors.
 

KevinM

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Nikki, I also think the neurologists are going to have to improve their “bedside manner” with the “you do or you don’t” diagnosis. It is a feared diagnosis to give, and with the previous criteria they had wiggle room to say “it’s on the table, but we aren’t sure, so let’s wait and see.”
 

Nikki J

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it shouldn’t be different for them. If you met possible ALS criteria they should have been saying you have it right along. Wait and see should always have been reserved for not fulfilling criteria or uncompleted rule out situations. I agree some have not properly explained what possible/ probable meant Which is terrible. I have told this story before. A FALS acquaintance was diagnosed with probable ALS. They thought it was maybe and it was several months before their spouse asked the doctor when will you be sure.

any neurologist - any doctor worth the title should be prepared to give bad news and the way to do it is clear and honest. I think most ALS specialist diagnose every working day or close to it. Especially in centers where they are the referral/ final opinion
 

KevinM

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I don’t know. When Dr. Pulley first told me I was clinically possible he said he felt there was a better than 50/50 chance it wasn’t. I don’t think he was trying to placate me.

What about local Neurologists? Do they have to make a call, too?
 

Nikki J

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If I recall at the time you were told that you did not have a an emg that met full El Escorial criteria? Am I misremembering? El Escorial means a diagnostic emg in one area and umn signs to be El escorial possible. if he said 50/50 then it sounds like possible in the colloquial sense. Eta I looked at your thread and at the time Pulley said your emg wasn’t typical ALS and we had an exchange about El Escorial possible then. I have no idea what he meant when he possible to you but a diagnostic purist would not have called it el escorial clinically possible
The definition of El Escorial possible wasn’t meant to include maybe
some local neuros will make the call but almost all will want a second opinion. Which is fair. And others will defer to ALS specialists which is also fair. I don’t think the criteria change that.
 
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