I am really worried! If it's ALS or not? Pls advise😭

[Happyboy]

28 Male,
Started last year June 2023, having shortness of breath and it lasted around 2 weeks and went away. Again at November I had a shortness of breath and we did all.the test
Chest Xray - Normal
PFT - Normal
Now breathing is okay! But at times I feel shortness of breath may be because of anxiety.
Chest CT - Normal, again PFT - Normal.

Last Dec 2023, - muscle twitching started, but now it's there almost across all over the body - abdomen,.legs, arms, cheek, butt, feet etc..

June 2024 - Did NCV for all limbs it came back normal and doctor said don't worry about ALS you are too young and it's BFS.

After this, I developed so many symptoms.
1. Left leg tightness when walking ( it comes and goes) but still there.

2. Assymetry legs between left and right. My left leg is more muscular whereas my right leg is fluffy. (Assymetry but not much noticable). May be I can have this for a quite a long time for years, may be I haven't noticed.

3. Tremors and internal vibration when lying on the bed.

4. Jaw vibration and jaw lock (Might be because of TMJ but not sure) it's kind of wierd sensation.

5. Sometimes my words are getting slurred which I can notice but not others...so not sure if I am more concerned about the pronounciation.

Nov 2024: They did Blood test - everything was normal but CPK levels was mildly elevated - 239 u/L ( I did skipping and squats without weights on the morning before the blood test).

I read for MND - the CPK levels will be midly elevated

MRI Brain - Normal
MRI Cervical spine - Only disc bulge but nothing alarming.

They did EMG test on all 4 limbs and tongue.
I have attached the report.

Doctor says nothing to worry about MND - Your EMG doesn't show anything to be concerning or worried about ALS.

I also.asked about the elevated CPK - He is not even concerned...and he said we need to worry only if it goes above 1000s...

There where one finding in EMG report - Increased duration and polyphasic potential mainly on the left side of the body muscles tested but other areas mentioned normal.

I am really worried if it's early onset MND.

Neurologist said - it's not even close pointing towards MND but I am really concerned about my symptoms and other things that are happening to me.

I really want to live. Because of this I have postponed my marriage and not getting married. My family and friends all are seeing me in a wierd way! This is actually making my mental state sick.

Pls throw some light or share your knowledge that can help me to come out of this mess.

EMG final report - IMG-20241106-231321 hosted at ImgBB

 

[Nikki J]

We aren’t going to disagree with your doctor who saw you in person. That is as they said not even close to an ALS EMG.

I am very sorry you postponed your marriage

 

[Happyboy]

Thank you for the reply!

But what does it mean polyphasic potential and increased duration! How do you strongly say it's not even close to ALS EMG?. I have read somewhere that polyphasic potential can occur on the MND patients.

I Just want to understand your point of view which can give me more clarity. Thanks in advance

 

[Nikki J]

Because it is the only finding. An Als emg has multiple abnormalities in a specific pattern. You had one thing only and everything else is normal. If you had a fever and read people with bubonic plague have fevers you wouldn’t decide you had it because you know a fever could be a cold or strep or a uti or a thousand other things and you don’t have the other signs of plague just like your emg doesn’t have the many other signs of als

It is unfortunately common for emgs to show little abnormalities in healthy people

 

[lgelb]

If your jaw is stiff or sore, see your dentist about a bite guard.

Everything Nikki said is very true. You should not worry about ALS or anything like it. If your fears are controlling you, like making you postpone marriage, you can get counseling to help reduce them.

 

[Clearwater AL]

Your doctor says nothing to worry about MND - Your EMG doesn't
show anything to be concerning or worried about ALS.

What great news! Hundreds of people would have been relieved to
hear that.

Maybe subconsciously you’re really not ready to be married.
You would not be the first… we’ve seen this before.

Do get help for your Health Anxiety and you may learn something.

 

[Happyboy]

Thanks for the reply!

What does polyphasic potential with high duration means - does it mean my muscles are damaged ? And it indicates a MND or muscle disease? Can it get reversed? I am really worried.

One more question I have:
The tongue EMG at rest always shows some small waves even at rest?

My doc said it's normal for the tongue to have a small waves pattern at rest.

Because on other muscles like arms and legs...it's always a flat line when at rest...but for tongue alone there is always a small waves like pattern recorded in EMG.

My doc said everyone has this and you can't keep the tongue still as same as the other muscles...

Is it true and any information your doctor shared or any experience you have ? Thanks in advance

 

[lgelb]

These questions are best addressed to your neurologist, because the best answers require having examined you and knowing your medical history. You can ask if there are any signs or symptoms that you should call in about if they occur. Of course, you always want to avoid substances that can cause muscle damage, such as street drugs and steroids unless prescribed for some reason.

An abnormal EMG is not necessarily anything to worry about at all, as Nikki noted. If your doctor is saying not to worry and you don't understand why, ask. If you understand why there is no reason to worry and are still worried, it's time to look at counseling.