Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,376
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
No that isn’t what I meant. People die with El Escorial probable ALS and rarely with El Escorial possible but the are NOT undiagnosed both El Escorial Probable and Possible are clinical Diagnoses. The El Escorial criteria are research criteria really
Many people are not even told their El Escorial status they are just told they have ALS. There are people here who do not have involvement of three areas and have diagnoses. This is how it should be. Otherwise one could theoretically be paralyzed both upper and lower extremities and if there was sparing of bulbar and respiratory ( so probable El escorial) they would be undiagnosed. They are diagnosed.
The OP by his description is not el escorial possible. I wonder if there was a comma somewhere in Dr Pulley’s thoughts such as clinically, ALS is possible.
Better biomarkers and earlier, easier diagnosis will save a lot of heartbreak for sure. People would get diagnosed or ruled out faster
Many people are not even told their El Escorial status they are just told they have ALS. There are people here who do not have involvement of three areas and have diagnoses. This is how it should be. Otherwise one could theoretically be paralyzed both upper and lower extremities and if there was sparing of bulbar and respiratory ( so probable El escorial) they would be undiagnosed. They are diagnosed.
The OP by his description is not el escorial possible. I wonder if there was a comma somewhere in Dr Pulley’s thoughts such as clinically, ALS is possible.
Better biomarkers and earlier, easier diagnosis will save a lot of heartbreak for sure. People would get diagnosed or ruled out faster