EMNG almost the same after 8 months

[jethro]

I insisted to make EMNG at the same doctor after certain time on the same device - gap of 8 months, since i think that doctors who "diagnosed me" just overtook diagnose from an expert.
results are almost the same, but i dont feel the same. i'm worse, and that is what my doc now is sawing: "forget about EMNG, we've done it, clinical status is most important now".

is he right?
why my EMNG is the same? shouldnt it be worse?

thx

 

[Nikki J]

Yes he is right. As a neurologist said to me the EMG is a test. It is important but it is not the whole story. It should show if lower motor damage has spread but others I don’t think it has been validated for progression. UMND can also wreak havoc and will not be reflected in the EMG. And yes UMND can cause weakness too

 

[lgelb]

The EMG is diagnostic, not prognostic. In part, that is because no muscle helps you walk, talk, breathe or eat all by itself, and not all muscles are tested anyway. And it takes a certain amount of damage to show up on an EMG, whereas damage that the EMG cannot see can cause you to be "worse."

 

[jethro]

interesting... i know that EMNG is diagnostic tool. only crystal ball is a prognostic tool, even with ALS there's no crystal ball.
@igelb you're right! there are too many muscles on body to be tested, so he tested same ones like 8 months ago. obviously, some other muscles dont work anymore.
weird thing is that right leg/foot drop is affected distal vs left leg quariceps affected proximal (mixture of myalgia and MND). i feel very tired, wake up tired (no matter how long do i sleep), but i have very powerfull arms with very affected right tenar and hypotenar and moderate affected left tenar and hypotenar. waitting to be spread on biceps, triceps etc...
same doc who made EMNGs said in dg: LMND! um... LMND=ALS, but noone wants to say definite ALS (El Escorial).

 

[Nikki J]

Definite ALS by El Escorial means ALS in 3 regions of the body. A significant percentage of PALS die before reaching those criteria. If you are probable ALS ( or even possible ALS) by El Escorial it does not mean you don’t have ALS.

The terms were designed originally for research stratification They were also picked when diagnostics were not as developed as now. El Escorial possible gets you into a good number of research trials even.

I think the terms are confusing

 

[jethro]

@nikki yes, it is very confusing. my current dr. never heard of el escorial. my als started in one region, so expert told me definite als.

 

[Nikki J]

Exactly. It can be definitely ALS but not El Escorial definite ALS. Very confusing. I think unless they explain really really well neuros should not tell patients their El Escorial diagnosis. There was someone in my FALS group who was told they had probable ALS and was holding out hope it was something else. They were crushed when the doctor finally explained in a subsequent visit because they asked when will you be sure?

 

[Statius@]

My Mayo diagnosis was "probable ALS" by El Escorial standards, which caused issues when I tried to claim VA benefits. Fortunately the PVA and ALSA folks got them to change the final diagnosis to "ALS" period, which got me over the VA hurdle. So in some circumstances the words matter--I can't calculate the value of the VA benefits, but it must be in the several $100,000 range--without the need to fight with insurance over coverage. I think my neurologist was more of a researcher than a clinician.

Ed