Platform trial

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston

EricInLA

Active member
Forum Supporter
Joined
Oct 20, 2019
Messages
92
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Thanks for the update Nikki! I notice the inclusion criteria says, "Sporadic or familial ALS diagnosed as clinically possible, probable, lab-supported probable, or definite ALS defined by revised El Escorial criteria." As I've mentioned before, the doctor who diagnosed me (Dr. Jonathan Katz at Forbes Norris ALS Center in San Francisco) said that technically, at least as of January, I only met the "clinically possible" criteria, though he was confident in his ALS diagnosis. I'm happy that this criteria appears to include people like me who never quite got all the way to "Definite ALS", and would prefer not to undergo yet another EMG just to get that designation. Those procedures are not exactly fun. Do you read this criteria the same way I do?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
El escorial requires a diagnostic emg. Possible is one area of the body but needs the classic pattern in a widespread ( multi nerve) area as well as upper motor neuron signs. Probable is two areas and definite is three.

they are horrible and confusing terms but I don’t think we are talking about the same thing at all. By El escorial even with a diagnostic emg and exam in all four limbs someone is probable not definite but of course they have ALS. I have told you before that I think you need that emg if you want to get into a trial. Certainly that is the case at mgh. I know someone who was just turned down for a trial for a non diagnostic emg and they are gene positive FALS


possible ALS is not at all the same as maybe/ likely ALS
 

EricInLA

Active member
Forum Supporter
Joined
Oct 20, 2019
Messages
92
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
OK I'm definitely learning something today. I didn't realize there was such a thing as a "non-diagnostic" EMG. I've had 2 EMGs - the first one (May, 2018) was exhaustive and only showed denervation/reinervation in my upper right extremity. The second one (December, 2019) seemed less exhaustive - focused mainly on my bad arm which showed widespread denervation/reinervation in multiple nerves. Just a couple of other tests in my right leg and my back, both of which looked fine. I think I sent you that report a few months back. Anyway, do these sound like "diagnostic" EMGs to you?

By the way, both diagnosing doctors found UMN signs - hyperreflexive knees/ankles - as well as lack of any evidence of ALS mimics, which is what I believe clinched the diagnosis :(
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The emg that I have in my messages showed only chronic denervation without acute. ALS has acute and chronic denervation in a widespread pattern. If you had that then they would count your hyperreflexia as a weak umn sign and call it possible by El escorial. I don’t see any signs on the emg or mention in the impression of ACUTE denervation
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
And it was just in one area, so non-diagnostic.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
One body area if widespread acute and chronic denervation in the right pattern with upper motor neuron signs gives a diagnosis of possible ALS by el escorial. Possible el escorial is accepted in this and many trials. The question is whether Eric meets that standard without another emg
 

EricInLA

Active member
Forum Supporter
Joined
Oct 20, 2019
Messages
92
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Indeed, THAT is the question. I thought I read that under the revised El Escorial criteria, fasciculations count as acute denervation, though I seem to remember one of you shot that down. I would really hate to be excluded from the platform trial because of these issues, and to have to do a 3rd EMG just for this. I will ask Dr. Lewis at my next appt. Thanks folks.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
There is an update webinar July 7 5pm. I unfortunately can’t give the link but if you search mgh als clinic and go to the clinic site then select the platform trial Drop down at the top rightand select overview the registration information and link to register are on that page
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
A link to the recording. It really just explained how it works. She also spoke briefly about their plan to have an expanded access program if they can raise enough money

 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,220
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Top