Seeking advice after 2.5 Years

Status
Not open for further replies.

SeekingGuidance

New member
Joined
May 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
NB
City
Woodstock
I have been daily twitching body wide for nearly 2.5 years now, with “hot spots” in my lower extremities (calves/feet) that are constant and have been constant the entire time. I am a male in my early 40’s who is otherwise healthy and on no medications.

My doctors have not been able to diagnose any direct cause for the twitching. I had an EMG a long time back that did not find anything related to ALS.

I fear that because my twitching has remained constant for this long of a period, despite every imaginable lifestyle change in hopes of rectifying it, that I am stuck with a very slow progressing case of ALS.

I have read statements online that it takes up to 5 years to dismiss twitching as being completely benign in nature.

Do I need to move on and accept this as just a new normal in life? Or do I continue to wait and see if this progresses?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,635
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Hi - twitching means nothing without clinical weakness which you don't have, let alone a clean EMG.
Please refer to the link below, and yes, you need to move on. Millions of people twitch without anything being wrong I'm very happy to say.
 

SeekingGuidance

New member
Joined
May 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
NB
City
Woodstock
Thank you for your reply. I am aware that millions of people twitch, but I do not believe that millions of people twitch throughout their body, including their tongue, for 2.5 years straight without a single day of relief. That isn’t normal, and it isn’t common. I’ve spoken with many many people and no one I have met has ever encountered twitching on this scale. Yes, an eyelid twitch from time to time, but not incessant and never ending twitching.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,420
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Roughly five years are needed in verified upper motor neuron dysfunction, to differentiate PLS from ALS. That's the only five-year wait I know of in this realm.

OK, I found a paper saying in rare cases (i.e. four cases in their series, each with both cramps and fascics) it can take 4-5 years to manifest. You must be referring to that. These "exception to the rule" cases can freak you out about anything. You might be stuck by lightning while mowing your lawn. It could happen. It has happened. So someone could write that you should make sure the sun is shining for days on end before mowing your lawn. Would it be wrong not to?

I grant you that nonstop twitching for 2.5y despite lifestyle changes is unusual, but there are many anomalies in a species as diverse as ours that do not equate to ALS. If your twitching hasn't converted to functional deficits over 2.5y, there's even less reason (meaning 0; I'll stand by that since the rare cases reported as progressing to ALS had both cramps and fascics) to suspect ALS. If you haven't, I would explore some kind of counterstimulation as a possible treatment (by a qualified PT or physiatrist) and/or malabsorption syndromes where you would basically be malnourished, perhaps consulting with a dietician or nutritionally-oriented internist.

Best,
Laurie
 
Last edited:

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,319
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Individuals with ALS do not twitch all over their body for years without having the hallmark sign of ALS, which is function failure, which you don't have. Your response to the kind forum member who answered you is laced with combativeness; that's unfortunate given that they were kind enough to respond to you and provide exactly what you were looking for- an answer. I'm sorry you don't believe it, but in my opinion, as well, your symptoms are not ALS.

Keep hydrated, reduce caffeine, reduce alcohol (if you drink), and stretch. Also, keep working with your doc.

Best of luck to you and take good care
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,635
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I can only agree with the above - while millions might not twitch as much as you report, people with ALS don't twitch for 2.5 years and yet have no failure. So whatever is causing your twitching, it sure ain't ALS.
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
402
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
I do not see anything combative about your follow up questions, which I see as legitimate.

My suggestion would be to arrange for a new EMG and clinical exam with a neuromuscular specialist that regularly treats and diagnoses motor neuron diseases. Fasciculations are more commonly associated with lower motor neurons, so an EMG testing several muscle groups would show abnormalities.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,420
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
It's estimated that fascics are experienced by 70% of the population. Stating that they are associated with lower motor neurons might make someone anxious think that fascics, generally benign, are always associated with some kind of disease. That is far from the case.
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
402
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
You’re right. It was poorly worded. I was awkwardly trying to make the point that having a new EMG done by an experienced specialist is, in my opinion, the only way to alleviate the gentleman’s anxiety about possible MND. IF there was anything scary going on—which I very strongly doubt—the EMG would identify it because of the nature of his symptoms.

I do think it is a bit misleading to cite the 70% number without context. It is factually accurate, but it is not true that 70% of the population experience 24/7 full body fasciculations.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,420
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Well, to be realistic, no human metabolism could handle literally 24/7 full body fascics...and the person would die for lack of sleep.

But to fine-tune the point, there are no recorded cases of fascics alone turning into ALS after 2.5y.

We generally try to help the worried well see when they do not need that kind of exploration because those resources are scarce. We will never discourage all the unnecessary diagnostics, but we can try.
 
Last edited:

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
402
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Okay. Your points have been made.

Good luck, young man. I hope you find the cause of your fasciculations.
 

SeekingGuidance

New member
Joined
May 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
NB
City
Woodstock
Thank you all for your replies. Indeed, I was not intending to be combative at all. I merely wanted to point out that my situation is demonstrably different than someone with the occasional eye twitch for an afternoon or even a few days.

I chose not to post here for a very long time because I thought I would be dismissed. Yet there are individuals on this forum who have themselves been told “there’s no way this is anything like ALS,” only to get diagnosed months later and return to be welcomed on the forum as a PALS.

I guess what I am going to do at this point is attempt to accept this as my new normal. I don’t really have the financial resources to repeat expensive tests when I have no hard evidence that my situation has changed since my last tests. I do not want, nor do I seek out, having this terrible disease. Maybe posting was a mistake.

I went over a year without giving much thought to ALS, but the continuation of my symptoms sometimes brings the thought back to mind, since we have discovered nothing to explain it.
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,319
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
I'm sorry you are going through this. I can imagine it must be incredibly frustrating. For me, when I give someone my opinion that their symptoms do not sound like ALS, it is based on multiple factors, not just a clean EMG. If someone has had years of only one issue, along with a clean EMG, clean clinical exams, and no function failure, it's a pretty strong indicator that they most likely have another issue.

ALS is so rare a disease that the folks here have much more intimate knowledge of the constellation of how it progresses, much more than someone who does not have the disease.

I do hope you find a resolution for whatever is going on with your body. Again, in my non-medical (but experienced) opinion, what you have going on really doesn't sound like ALS.

Best of luck to you. Please take good care.
 

SeekingGuidance

New member
Joined
May 16, 2021
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
NB
City
Woodstock
I got thinking.... I have been diagnosed with Fragmented Sleep by a sleep study before I ever started the twitching. I wonder if this could be related.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
2,123
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
Seeking, when you look up Fragmented Sleep you find several of these for one...

"Anxiety is frequently connected to sleeping problems. Excess worry and fear
make it harder to fall asleep and stay asleep through the night. Sleep deprivation
can worsen anxiety."

Have you had any counseling/treatment for Health Anxiety?

Don't know where this came from...

"Yet there are individuals on this forum who have themselves been told “there’s no
way this is anything like ALS,” only to get diagnosed months later and return to be
welcomed on the forum as a PALS."

I still have a very good memory... maybe you could tag just the Thread dates of
what you found - read from old postings.
 
Status
Not open for further replies.
Top