Old 02-06-2019, 07:04 PM #1 (permalink)
Myrtle's Avatar
New Member
 
Join Date: 2018
City: Dewitt
State: MI
Country: Us
Interest: Other
Posts: 20
Myrtle is on a distinguished road
Myrtle Myrtle is online now
New Member
Myrtle's Avatar
Join Date: 2018
City: Dewitt
State: MI
Country: Us
Interest: Other
Posts: 20
Myrtle is on a distinguished road
Default Neurologist follow up

Going in on Friday for a follow up with my neurologist because I have finished physical therapy with no improvement. I was previously diagnosed with cramp fasiculation syndrome but it doesnít appear to be the case because I have weakness and atrophy noted by my physical therapist... which at the worst is a two inch difference from one bicep to another.

A few months ago I had a completely clean emg other than 1 fasiculation. I have continued to have constant twitching and Iím to the point that itís hard to lift a boiling pot of water. How often can an emg miss als on an evaluation? I have tried to find the accuracy statistics online and couldnít find anything. Does anyone have statistics on an emg accuracy?
Myrtle is online now   Reply With QuoteReply With Quote
Old 02-06-2019, 07:16 PM #2 (permalink)
KarenNWendyn's Avatar
Very Helpful Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,387
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
KarenNWendyn KarenNWendyn is offline
Very Helpful Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,387
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
Default Re: Neurologist follow up

Here is what you posted on 12/23/18: “My previous threads are old and have been locked so that is why I’m opening a new thread. A couple months ago I did get an emg and based on the results my neurologist came to the conclusion I have cramp fasiculation syndrome.

The reason why I was given that diagnosis was because to him I didn’t show atrophy or weakness based on the tests given to me. Since then I have started physical therapy and they have noticed my left side is considerable smaller and weaker.

My first emg was done by an neuromuscular specialist and they found nothing other than fasiculations. I was wondering how often does the first emg miss als? Should I schedule a second emg or am I wasting everyone’s time.”

————

Fast forward to now where you’re again asking about EMG accuracy.

EMG interpretation is operator dependent. That said, when looking for ALS, there is no one more qualified to perform and interpret an EMG than a neuromuscular disease specialist. According to your previous post, that is the type of doctor who performed your most recent EMG.

It would be highly unlikely that EMG which was done several months ago could have missed something, especially when interpreted by the neuromuscular specialist in the context of your history and physical exam findings.

So as far as I’m concerned, you’re clear of ALS.

If you feel things have changed and you still have doubts, then you might check back with the neuromuscular specialist to see what they think.

Last edited by KarenNWendyn : 02-06-2019 at 07:27 PM
KarenNWendyn is offline   Reply With QuoteReply With Quote
Thanks from
ShiftKicker (02-06-2019)
Old 02-06-2019, 07:16 PM #3 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,919
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,919
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Neurologist follow up

Past threads here:
Trouble getting a neurologist referal
Emg

Myrtle, if you look at some other recent posts by those who have come here searching, you can see that ALS is not the only reason people experience a whole variety of symptoms. I think you may be jumping the gun with regards to assuming an EMG has missed ALS and trying to find stats for that to prove possible ALS. There are many reasons for symptoms such as yours. Particularly, as quite a few people have already tried to tell you, your reported symptoms simply don't fit in with the normal symptom pattern of ALS. You have pain and digestive issues, for example. The "Read Before Posting" thread has a partial list of differentials, and is not at all complete by any means.
ShiftKicker is offline   Reply With QuoteReply With Quote
Old 02-06-2019, 09:49 PM #4 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,858
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,858
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Neurologist follow up

Even if you have clinical weakness, there are more likely causes than ALS (and if a pot of boiling water is the main thing you have difficulty with, join the crowd). Following up with your neurologist therefore makes more sense than jumping back to ALS.

Atrophy, if it's new, and several of your other symptoms, can relate to systemic issues as well, a matter for your PCP.
lgelb is offline   Reply With QuoteReply With Quote
Old 02-07-2019, 07:08 PM #5 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 856
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Vincent Vincent is online now
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 856
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Default Re: Neurologist follow up

Look, you are just going to have to live with the fact that you are going to live. A CLEAN EMG=NO ALS. There isn't a single patient on here with a clean EMG, or who wouldn't trade your clean EMG for our abnormal ones. And an EMG will show significant abnormalities well before symptoms present. Hanging out here is not healthy, nor is your need to be diagnosed with a fatal disease.
Vincent
Vincent is online now   Reply With QuoteReply With Quote
Reply

Tags
als, atrophy, clean emg, diagnosed, emg, fasiculation, improvement, lift, neurologist, physical therapy, statistics, therapy, twitching, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Follow up neurologist appointment today Malthoff8 Do I Have ALS? Is This ALS? 15 12-07-2018 08:37 PM
2nd Follow Up With Neurologist, ALS Specialist stvhck Do I Have ALS? Is This ALS? 5 12-09-2011 08:26 PM
follow up and thank you tmarino Do I Have ALS? Is This ALS? 1 05-14-2010 12:05 PM
follow-up irismarie General Discussion About ALS/MND 15 05-08-2010 12:44 PM
Follow up keane Do I Have ALS? Is This ALS? 4 03-23-2009 12:14 AM


All times are GMT -5. The time now is 05:15 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016