Status
Not open for further replies.

cecilirv

New member
Joined
Nov 29, 2018
Messages
6
Reason
Learn about ALS
Country
US
State
NJ
City
Hackensack
Hi all, sorry for the long post but need to get it out... I have been lurking for a few weeks now. I have had twitching- mainly in the calves/thighs/butt- for 2-3 weeks now. Had been mainly in my quad next to my knee but rarely it twitches there now. Legs are pretty much non stop at rest (unless I take a Xanex, I feel as though they subside a little, or maybe just don't notice each/every one?). I get twitches in the arms/back/stomach as well but not as often. Got head/neck/lower back MRI which came back normal, as did all blood tests, "unfortunately"... I am set to see an ALS specialist in NYC in a week or two.

Have seen a neuro twice who does not see anything physically wrong with me after all of the physical tests- my legs are a little bit weak, but nothing of note. Could be due to my 24/7 anxiety now and lack of sleep from worrying. I feel like my voice is a little weaker than normal and have a little bit of a lump but no issue swallowing really. I always yawn a lot but recently yawning has been relentless, one after another. These could also just be in my head at this point. Other odd "symptoms" are a burning sensation/ pins and needles in my legs, usually after a lot of physical activity (and the twitching coincidentally mostly stops during this burning phase).

The Neuro told me I could get an EMG for 'further reassurance' which I did and sure enough, came back abnormal below my knees on both legs, the nerve part was fine but I understand that doesn't have much to do with ALS. Upper legs looked ok but were somewhat inconclusive, and I believe the lower back/groin were also normal. The Neuro "still doesn't think it is ALS" and "could very well be other things" but from what I've convinced myself it seems pretty spot on. He also said it could potentially be "nothing". Not sure if he is just trying to make me feel better or not before I go to the ALS specialist, or this is his way of saying- "it's not ALS.....yet"

I anticipate at Columbia NYC they will do the EMG on the whole body and we'll take it from there.

My question after all of this is: in all of your experiences are there instances where twitching + abnormal EMG don't always eventually lead to an ALS diagnosis? Could it realistically be something else? I just feel like I am delaying the inevitable and waiting for the next shoe to fall. I'm only 30 and just starting my life/family so you can imagine this has been a very stressful time. Thanks for reading.
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
It would be most helpful if you could post your EMG results with the conclusions/ summary.

EMGs are done not just for ALS. They can also show myopathies (primary diseases of muscle) and focal muscle injury related to nerve problems. Even some medications can affect the EMG.
 

cecilirv

New member
Joined
Nov 29, 2018
Messages
6
Reason
Learn about ALS
Country
US
State
NJ
City
Hackensack
Hi Karen, I see you on a lot of posts here and appreciate what you do. Attached is the report. The clinical observation like I mentioned was normal. I see now where he says what else it could be- we can rule out the radiculopathy due to the negative MRI's.

Karen, after searching online a bit I do see that this could be a result of other myopathies. I have been so fixated on ALS that that's really all I've been considering.
 

Attachments

  • EMG (1).pdf
    121.1 KB · Views: 501
Last edited by a moderator:

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Thanks for posting the summary. That’s very helpful.

A number of things are still possible at this point. Since the abnormalities were so localized, the odds are overwhelmingly in favor of this remaining a localized issue. Motor neuron disease is mentioned in the list of possibilities, which is why they recommend more extensive EMG testing. But the reality is that if you had ALS, abnormalities would have shown up in more than one small area.

Best of luck to you. Please report back after you have further evaluation and let us know how it all turns out.
 

cecilirv

New member
Joined
Nov 29, 2018
Messages
6
Reason
Learn about ALS
Country
US
State
NJ
City
Hackensack
Hi Karen, thanks for the reply. I don't think you are a doctor but you clearly can read these things better than I can! What exactly are all those things on the chart- parts of upper and lower legs? And only the lower legs were showing abnormalities?

A follow up question- is it possible that I kind of went in for this "too early" and it hasnt had time to properly show up elsewhere as far as an EMG goes? Is it possible that I got the EMG too early, or is that not how it works?

I am just thinking that I do have relatively consistent twitching elsewhere in the body now (no weakness) so am thinking about that angle.

I know these are questions better for the doctor but I figure that some here may have some insight until my appointment.

I will certainly report back and I appreciate it.

BTW- my name is Ricky :)

I still may think of some more questions so stay tuned...
 
Last edited by a moderator:

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,501
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Ricky, twitching means nothing and an EMG cannot be done too early. You do not evidence ALS in the least and it appears the doctor thinks that as well. For future questions, please bring them to your doctor.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,189
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Actually, Ricky, Karen is a doc, but more to the point, as she mentions, the findings are localized whereas your symptoms are widespread. Thus, the EMG was not "done too early" and even where it suggested nerve damage it showed that you had enough motor neurons to make movement happen.

So I'd expect your visit and second EMG will reassure you and lead to a different diagnosis.

Best,
Laurie
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
998
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
City
Barrie
An abnormal EMG does not automatically point to you have ALS. An EMG can point to many different abnormalities not just ALS. So you have something going on and the second EMG will show either progression, improvement, or no change. Just keep in mind a persistent cough can be anything from a cold you can't shake to stage 4 lung cancer. But not every cough is cancer, most of the time you just need to let your body heal itself.
Vincent
 

cecilirv

New member
Joined
Nov 29, 2018
Messages
6
Reason
Learn about ALS
Country
US
State
NJ
City
Hackensack
All, thanks for the replies, I do truly appreciate you taking the time and makes me feel a little bit more optimistic.

I guess my final question after reading the replies is that- *even with nerve damage like pinched nerve, etc effectively ruled out*- this abnormal EMG result can in fact be from other things? Just not sure what.

I think I am generally confused about EMG's- I just have been under the impression that an abnormal EMG such as the one I posted is going to eventually lead to this disease, which maybe is not the correct take from what the replies have been. I was not able to discuss the EMG itself in detail with the doctor and don't fully understand the results. I see that the twitches all over are pretty unrelated from the replies and sticky, but that is what made me go in in the first place.

In particular, if Laurie can expand on what this means, that would be helpful to me:
"even where it suggested nerve damage it showed that you had enough motor neurons to make movement happen. "

I look forward to any further comments and will leave you all alone after my reply here. I know that these questions are better for the specialist but just looking for some guidance and info until my appointment. Thanks again.
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Ricky, you’ve been answered here by a number of knowledgeable people.

You said, “Have seen a neuro twice who does not see anything physically wrong with me after all of the physical tests- my legs are a little bit weak, but nothing of note.”

ALS is a clinical diagnosis which requires documenting weakness on a neurological exam in at least three different regions (bulbar, cervical, thoracic, lumbar), finding both upper and lower motor neuron abnormalities, and documenting progression over time.

Nobody is going to be able to diagnose you with ALS based on the information you’ve presented.

And yes, as we’ve noted, there are a number of other conditions that can cause EMG abnormalities.

It’s my understanding that you have an upcoming evaluation at Columbia. I suggest that you save your questions for the doctor there after s/he assesses you.
 

cecilirv

New member
Joined
Nov 29, 2018
Messages
6
Reason
Learn about ALS
Country
US
State
NJ
City
Hackensack
Ok Karen, thanks and will do.

Ricky
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,189
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
EMGs are used to diagnose a wide range of conditions, of which ALS is one of the most rare.

What I meant about your having enough motor neurons is that recruitment and motor unit morphology were normal across all muscles tested.
 
Status
Not open for further replies.
Top