When to get another EMG?

[lotusbri]

Greetings everyone. I'm new to posting, although I've been lurking for a few weeks. I've tried really hard to search the forum for my exact question, and although there are some close topics, I'm not sure if they hit right on my situation, so I would greatly appreciate any information you can give me, as like many of us here....my anxiety is off the charts with worry.

One year ago I fell ill. It started with random fainting, dizziness, fatigue, insomnia, anxiety, brain fog and some other weird stuff. All of this I realize is not associated ALS (I totally get that!). I saw a neuro back then who wanted to rule out MS. I had a clean MRI of the c-spine and brain. She also did an EMG at the time and it came out clean (said I might have a bit of carpel tunnel) however she only did my arms and didn't recommend anything else.

Ok fast forward to now. Over the last year I'm still feeling weird all the time. The fatigue is always with me, as is the dizziness. In the last two weeks I've had some new stuff going on. It started with severe muscle spasms in my back. From there my back and neck have felt very strange....I don't want to use the word weak, because it would be pereceptive (not clinical) at this point. I can say though...that it feels like my torso can't support the weight of my body anymore...same for my neck...like I'm just going to crumple onto the ground. I'm having some widespread muscle twitching as well, but it's really quick....they don't last for minutes or anything like I've read about for ALS.

So my question is this....
if the neuro only did an EMG of my arms and it came out ok, does that mean I'm "clean" clean for ALS? Since a year later I'm having much worse symptoms, does it make sense to redo the test in the area where I'm having all the problems....mainly my back and neck? Is an EMG of one area completely comprehensive?

 

[ottawa girl]

If you are having ill health for a year - I would urge you to go back to your doctor. It's not normal to feel that you are crumbling. The professionals should check you again and continue checking until they identify problem. Please keep in mind, that anxiety may exacerbate symptoms. So try to calm down (if you can), make an appointment and let us know findings. It may also be helpful if you record the details of symptoms in some chronology and bring the list with you when you have your appointment. Good luck to you.

 

[bigguy]

Your symptoms are not indicative of ALS, however if you've had these problems continuously for a year without any or only brief periods of remission, then you should definitely see a doctor as soon as possible.

An EMG will only detect neurogenic changes caused by ALS (or anything else) if ALS has begun to affect the nerves/muscles in that area. The only way to "rule out" ALS completely is to get a comprehensive EMG exam or less extremely, an EMG of your symptomatic muscle groups. That said, the EMG is a very precise and sensitive instrument and will often detect neuropathy/myopathy even before any underlying problems become symptomatic.

 

[momap53]

Definitely time to go back to your physician. Good luck and please let us know how it goes.

 

[lotusbri]

Uggghhhh I was really hoping you all would get mad, tell me to get lost, tell me that a clean EMG equals no ALS, and I could stop making myself sick over this. I know there are mitigating factors though and I greatly appreciate your responses. I have been seeing a GP here in Shanghai, and unfortunately he's not comfortable recommending a neuro here on the mainland so I'll have to fly to Hong Kong and try to navigate the system there.

I'm just scared......
Really, really scared.

 

[notme]

Hi

I do t think any of those that have respo ded think your sytoms sound like ALS, they do sou d like something is going on, though, that needs to be discovered.

It sounds like you may have mistaken the concern for your health as a concern it might be ALS. Lots of things can cause generalized fatigue and the other things you mention.

ALS would cause a weakness that begins in one area and spreads. This sounds much more like something with your muscles at large....and the fainting, dizziness, etc could be unrelated, so ethi g serious or something.mot too worrisome.

I think I'd go back to the GP for a complete workup and go from there. Lots does NOT fit ALS

 

[HelenL]

lotusbri, I agree with Notme that the others aren't necessarily saying you may have ALS, but that there is something definitely going on with you. It sounds like it started with some sort of virus, and that should also be ruled out... there are so many things that can cause neuro issues that are not as rare as ALS.

Good luck and go back to your doctor, get the emg to rule it out. Keep us posted...

 

[Alyoop]

I am sorry that you got the wrong idea. As Notme and Helen said, it's concern for your health, not the fact you have ALS.
We are not doctors here, and it sounds as if you are feeling most unwell, and need to get checked out, just in case they find something treatable. Then you can get better. That would be nice.

Best wishes, and do please check back and say how you get on. It's lovely to hear feedback and helpfully to others who may be reading.
Aly

 

[sadiemae]

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor.___

 

[lotusbri]

Thank you everyone! Doc is looking at antibodies today to rule out anything rheumatological, then it's likely off to Hong Kong to the neuro. I will keep you all posted.

I deeply appreciate your responses!