EMG results

[Jem1112]

Hi! Had a second updated EMG done In August. Doctor reported that I have only two areas of weakness as of this time. However my eurologist states that my clinical diagnosis IS ALS because of other screenings she did in office . So while the EMG didn’t meet the El Escorial qualifications, other things show ALS diagnosis??? Should I get a third opinion.....?????? Thank u

 

[KarenNWendyn]

Did you see a neurologist specializing in neuromuscular disease? And where were the two areas of weakness?

If you could post the conclusions of the EMG results, that would help.

For a diagnosis of ALS, El Escorial specifies that weakness be demonstrated in at least 3 of 4 spinal segments with characteristic EMG abnormalities counting as weakness. Upper motor neuron findings also should be present, and mimics need to be ruled out.

Second or third opinions may be helpful in cases that are not clear cut, but it would be helpful for us to know more about the EMG results and other exam findings.

 

[Nikki J]

Wide spread emg findings consistent with ALS and umn findings in one area would be El Escorial possible ALS, 2 is probable and 3 definite but the truth of the matter is that all three are treated as if they have ALS and often possible will get you into a trial. Probable virtually always does. Getting a diagnosis of possible or probable doesn’t mean they think you have something else

El Escorial criteria were developed for research and subsequent research has found with today’s diagnostic technology to rule out mimics misdiagnosis if the diagnosis was made by a competent neuromuscular specialist with a second opinion is very rare even with so called possible

It is a sad truth that a significant proportion of PALS die before meeting the criteria for definite ALS. Dr Bedlack did a presentation several years ago where he explained this clearly. I can’t find it though

I am sorry to welcome you Jem. I see you are seeing Dr Owegi. I am sure she would be happy to explain where you are in the diagnostic criteria

 

[Kristina1]

I was diagnosed with EMG findings in two areas (bulbar and arm/hand); it was officially "probable ALS". There were many UMN and LMN clinical exam findings. I was seen at a major ALS Clinic, with a second opinion at another major ALS Clinic. It was explained to me that "probable ALS" doesn't mean you "probably" have ALS, it means you definitely have ALS, but it's a type of diagnostic category/distinction from the El Escorial criteria, along with "possible" and "definite" like Nikki said. I was able to enter a clinical trial right away because, again, anything "probable" or higher they consider to be ALS (im not sure about possible, it might depend on the study). This diagnosis is also contingent on continued progression, and I have no doubt if I went back for a repeat EMG now they would see it in my legs too.

Sorry if this is unwelcome news. I know nobody wants this, but having clarity can help get your mind around it a bit.

 

[Kristina1]

Oh, I just saw Nikki's last comment. I didn't realize you were seeing Dr Owegi (actually i think i remember now from your previous post). I see Dr Owegi too, and had my second opinion at MGH. Dr Owegi is great, so is the entire clinic team at UMass. They are very responsive to email, especially Jodi, the NP. She usually replies within minutes. Just sharing because it can be much more convenient than calling if you ever have an issue. If you do call, make sure you call Renee, the als clinic office secretary, so you aren't routed through the main neuro line which takes forever. Renee is: 508-334-0238.