Possibly ALS?

[JT85]

Results from my EMG, my doctor said No specific evidence of ALS, this emg is not normal though. Im scared and confused. Any thoughts? I dont have much weakness, just burning in my left arm which is fatigued after use and my balance is sorta off.

 

[Nikki J]

It doesn’t show the hallmarks of ALS so no. There are many reasons for emg abnormalities What did your clinical exam show and what did your doctor say was next

 

[JT85]

The physical test passed. She said my “bad” arm/shoulder was still strong, it only wore out faster than the other so the initial strength right off the bat was there thankfully. I’m guessing with ALS the initial strength is lagging or null? She did other random physical tests which were good according to her.

 

[Nikki J]

With a normal exam and that emg you should be clear. There are other things on the exam besides weakness that are seen in ALS. If you had no weakness, no other signs and an emg that does not show ALS changes you are good

 

[JT85]

thank you for the input, just messaged my doc the following,
“obviously have health anxiety, but could this have been too early to dismiss any MND? I wasn't sure if I was supposed to get a second one or if I should just stop worrying. Thank you for your help as this has been a rather terrifying past 3 months”

 

[JT85]

Doctor’s response

 

[affected]

Nikki has given strong advice.
I suggest you read this carefully, especially where it explains why EMGs are not done too early if you have symptoms, the damage is already well underway.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

I hope your doctor can help you find a place of health again soon, work with them.

 

[Nikki J]

Go for the follow up of course. Reading that response though it sounds like the idea of repeat is testing is because you asked rather than the doctor is saying oh yes this definitely needs follow up. They 1 want you to be reassured and 2 are always afraid of a 1 in a million chance of a lawsuit

 

[JT85]

Just out of curiosity, both you and my doctor mentioned that my abnormalities are NOT consistent with ALS. What does an ALS positive emg test look like?

 

[Nikki J]

Your doctor will explain fully but for one thing all those 0s in those lefthand column wouldn’t be there. Those are where the acute damage of ALS is seen

 

[affected]

It really is time to go back to your doctor. Please understand you may be asking people who are paralysed and breathing with machines here to answer numerous questions. Your doctor has examined you and can give you the best answers and advice.
Please do read the link I gave you, it is invaluable.

 

[JT85]

Any ALS charities or organizations that would let me visit some people with the disease? I feel and want to help especially because of this scare I have.

Also I’ve made a follow up with the neuromuscular doc. My mom said the same thing about the one in a million as far as a follow up

 

[JT85]

affected, I’m sorry. No more questions

 

[JT85]

NIKKI J, do you think the EMG they did on my left leg, hip and arm would've picked up any respiratory issues? I've read that they basically never do EMG's on the diaphragm, but I've had intense rumbling/twitching on the left side under my ribcage. I had a PFT 2.5 months ago that showed some decline, but this is what my Pulmo doc said.
" Spoke with one of our neuromuscular pulmonology experts who took a look at your PFTs. He thinks they are quite normal and the drop of 13% in someone who is overweight is common."
This was in mid June, I don't really understand the timeline of when I should get these tests redone. I know twitching is NOT a good indicator of ALS, especially since its all over my body, but the specific and frequent Diaphragmic location is worrisome to me.

 

[Nikki J]

you should ask your neuro all your questions. No that emg would not pick up pure isolated respiratory onset but you spoke of a “ bad” shoulder- so not you. Respiratory onset is very rare anyway. I think you must be fairly young as you spoke of your mom commenting on something so even more rare