Conflicting information on the internet, help appreciated

Status
Not open for further replies.

anonymousthanks

New member
Joined
Apr 19, 2020
Messages
2
Reason
Other
Diagnosis
00/0000
Country
UK
State
HP
City
Portsmouth
Hi everyone, thank you for the forum.

So I've had fasiculations that I've known about for maybe a month.

But I'd begun to be a little reassured by people saying that BFS fasiculations tend to be all over the body etc.

Then I read this on a Q&A site with someone cited as being a doctor, it seems contradictory to what reaasurers on this forum say and therefore almost as if less fasiculations may actually be a bad sign, especially if their location is random, could anyone explain please? Here is the Q&A:

Fasciculations Frequency “definition”
I have read in “principles of neurology” that benign fasciculations tend to be more frequent and constant in location than the malignant ones. What do they mean by FREQUENT? 1. More frequent in EMG: once it fires the frequency of each “muscular jump” is higher (shorter intervals between each fasciculation) 2. Or, maybe they mean the clinical way: that the patient gets them more, feels more fasciculations in a given muscle -the frequency of each such “battery” of fasciculations is higher. HE gets more twitches?
What do you think they mean 1 or 2?

Answer:

It is 2, referring to frequency in clinical way

Comment:

So according to your clinical experience: the random twitchers, those who get them few times a day only and every time in totally different location (a twitch in the calf muscle once every hour or less, for example)- these are the twitchers who should worry more about als? * More than the twitchers who have them continuously in the same muscle?

Answer:

Yes, this is true, it is good clinical assumption to follow, but it is not perfect, as surprisingly some patients with ALS are oblivious to their fasciculations.

Source: Amyotrophic Lateral Sclerosis (ALS) - TeleEMG
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,370
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
We are not here to argue. I will say 1 that is a sales site and clicking around did not yield me this person’s nameor credentials. They may have an MD. They may even be a practicing neurologist. Or maybe not. Some doctors say crazy things

2 a ton of people twitch. Bfs is a thing. If you don’t have weakness I wouldn’t worry if you haven’t seen a doctor do so when the world gets back to normal
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,691
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
No matter what you read - this is what you need to compare it to:

This is our offical position, we have years and years of personal experience and we won't argue anything you find that says different. The internet is capable of giving you every possible different answer.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,816
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
From your post I found your Question - Comment - Answer layout on cloudEMG.com.

This is up to you how much you may wish to put your faith into what you may find on
the Internet.

Go to that site, no accredited Neurologists or accredited ALS medical centers noted.
The page...

EMG IN THE CLOUD

Scroll all the way down to the very bottom of the page (in the dark area) and
click on it's Facebook page. Their Twitter account does not exist.

Also in it's mix is teleEMG.com. At the bottom of their page...

Disclaimer: Participation in a TeleEMG, LLC training is not intended to provide a guarantee that a healthcare provider has been sufficiently trained to perform the procedure(s) demonstrated. This Training and training material is selective and does not cover all possible uses, precautions or possible side effects of electrodiagnostic testing.

I posted all this as a suggestion.... medical sites/sources on the Internet (unless known to be accredited
Mayo - Hopkins and etc.) require some research.
 
Last edited:

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,245
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
Trust your doctor.

If you don't trust your doctor, change to a doctor you can trust.

If you don't have a doctor, find a doctor you think you can trust and set up an appointment with them.

Don't trust Dr. Google. And, don't think that an afternoon of googling is equivalent to 10 to 12 years of dedicated neurological training and experience.

Steve
 

anonymousthanks

New member
Joined
Apr 19, 2020
Messages
2
Reason
Other
Diagnosis
00/0000
Country
UK
State
HP
City
Portsmouth
The problem is, if you read the answers they seem to be answers by someone scientifically educated.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,370
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Doesn’t mean they are right read Steve’s post again. Go see a doctor. Stop arguing about this and believe whomever you wish. Closing thread
 
Status
Not open for further replies.
Top