Status
Not open for further replies.

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
Hi everyone,

I have noticed that too many people in this forum are putting information out of context. I researched on all sorts of information on twitches and and its presentation. And I will let everyone know that twitches alone are NOT ALS specific. I do not know how to put my message across any stronger, but twitches alone are NOT ALS specific. Nothing upsets me more but to see people discuss their twitches, atrophy and weakness out of context. Everyone in this forums needs to be sensitive to other people who are twitching and are looking for reassurance on the web. Anyone is free to post, but if you are going to share your experiences make sure to have your information correct or else do not post. It does no good for people who twitching and looking for reassurance, for people in this forums to say, " I have been Dx with ALS and I have twitches". Twitching is extremely common and isn't a major concern in the clinic because twitches are harmless and subtle. It is only those 10% of people that twitch that are hypervigilant and check the web and freak out when they see twitches and its association with ALS.

I twitch all the time 24/7. I twitch in my eyelids, temple, occipital area, shoulders, neck, biceps, triceps, forearms, fingers, abdomen, quads, hamstrings, calfs, feet. My twitches are not constant, but random that will flare up in diffferent places each day. my Twitches are characterized at times as thumbers, vibrations, flares etc...My mother and my 11 year old brother twitch all the time. I see my younger brother twitch in the same places I twitch. I bring this up to show you that anyone can twitch and if someone who was Dx with ALS happens to twitch randomly, that does not mean these twitches are per say ALS related. It just happens that someone with ALS happens to also have benign twitches. Thus, for people who are twitching and are in search of reassurance please be aware that your twitches are more likely to be benign.

If you are in search of reassurance please look for help. What helps me is cognitive behavioral therapy because I jump to conclusions to often and think for the worst. I tend to have mind distortions to often. I think for the most part a lot of people do suffer from it and need treatment. If I have acid reflux I think I have stomach cancer. If my back starts to hurt, I think I have a CNS tumor; headache...you know it, brain cancer.

What also helps merelief my anxiety is lifting weights and running 4-5miles/day. If this something people enjoy doing I would advice people to start doing it more. Alright everyone, I hope this helps people. Take care.
 

guwainengle

Distinguished member
Joined
Jul 9, 2007
Messages
112
Country
US
State
PA
City
Duncansville
Is there a drug out there that can stop the twitching? I have 3 types of twitches-- the fasciculation- the twitch and the spasm-- these are accompinied by leg cramps and they say it is not ALS-- -- I also have exercise intolerance-- I need to stop the twitches so I can sleep... Give me an idea and if it works--I will send my next college bound kid to UCLA.

G
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
How are you running 4-5 miles aday and lifting weights with ALS >If you are, either you dont have ALS or if you do you are ssoooooooo lUCKY .You are still functioning. What are your symptoms.By the way there are Benign twitching However it is differently a symptom of ALS
We share the knowledge here from experience Not text books. The problem with Text books .Is we are not books and half of the MD that read these so call text book havent a clue. They should be listening to the people with ALS We are better then a book we live it everyday.
Consider yourself fortunate.some of us cant run a inch and cant lift a pound.Pat
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
patricia1 said:
How are you running 4-5 miles aday and lifting weights with ALS >If you are, either you dont have ALS or if you do you are ssoooooooo lUCKY .You are still functioning. What are your symptoms.By the way there are Benign twitching However it is differently a symptom of ALS
We share the knowledge here from experience Not text books. The problem with Text books .Is we are not books and half of the MD that read these so call text book havent a clue. They should be listening to the people with ALS We are better then a book we live it everyday.
Consider yourself fortunate.some of us cant run a inch and cant lift a pound.Pat


Patricia,

Hey there! First I am not Dx with ALS. Secondly, I only have benign twitches. I do not have any other symptoms other than random twitches. I am extremely sensitive to this condition and the sequelae it brings with it, but I live with these twitches and most likely are benign. Perhaps, I am wrong and I just happens to have ALS and will progress more in the next months or so. I do know that random twitches are not ALS specific. ALS is a neuromuscular diesease that is continguous, meaning that it starts in a set of motor neuron and will progress continuously up the nerve tracts. You will start losing muscle in one muscle and start to twitch in the same muscle because of the denervation/reinervation. For example: hands and then forearm, biceps and followed by shoulders. If someone with ALS happens to have random twitches, most likely they are benign. Hopefully, this will clear things up.
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
guwainengle said:
Is there a drug out there that can stop the twitching? I have 3 types of twitches-- the fasciculation- the twitch and the spasm-- these are accompinied by leg cramps and they say it is not ALS-- -- I also have exercise intolerance-- I need to stop the twitches so I can sleep... Give me an idea and if it works--I will send my next college bound kid to UCLA.

G


Guwainengle,

I am sorry to hear that you twitching and have cramps. There are several treatments out there that claim to work. However, there is no concrete evidence that one med will work. There isn't enough research out there yet. thus, I prefer not to recommend anything for your symptoms. Sorry for not helping much. I twitch all the time and have cramp-like feelings, but I do not take any meds, just multivitamin. I will share with you that taking a trip out of the town will help. I went to the carribean for a week and notice a huge difference there. I stop twitching after 5 days of no stress and plenty of sleep. I had a lot of anxiety and slept very little when I notice these twitches because I thought I had ALS. I stopped worrying after awhile after researching information. Yes, the exercise intolerance comes and goes for me. Some days I can play a full soccer game, others day I cramp up and get extremely tired. The days that I am extremely tired I notice that I worry to much on my muscles. I don't know what causes exercise intolerance but my mind seems to play a major role in this. That is what I think. fare well mate and hope this helps. Let me know if this is enough to consider your child bruin-bound.
 

guwainengle

Distinguished member
Joined
Jul 9, 2007
Messages
112
Country
US
State
PA
City
Duncansville
I appreciate the input-- Probably sending the next one to follow the others-- Saint Francis... But-- I have started with twitches and fasciculations and they are getting worse-- the cramps continue-- and it is getting to the point where there needs to be something out there to get it to stop-- I was hoping you had an answer-- everybody needs a vacation-- I just want a vacation from the twitches-- that would be better than a cruise or trip.

G
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
UCLA...

some of us would love to go on a trip to the carribean....good for you....but..really, it hurts to get out of bed every day ok.

We thank you for your support, but unless you've walked the walk with a real neruomuscular issue, it's hard to help. I'm sure you mean well, thx for your support.

Some of us don't feel well, are loosing weigh and muscle with no explanations while some...just have benign twitching.

Consider yourself fortunate.

Rgds.
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
guwainengle said:
I appreciate the input-- Probably sending the next one to follow the others-- Saint Francis... But-- I have started with twitches and fasciculations and they are getting worse-- the cramps continue-- and it is getting to the point where there needs to be something out there to get it to stop-- I was hoping you had an answer-- everybody needs a vacation-- I just want a vacation from the twitches-- that would be better than a cruise or trip.

G


I would never understand what you are going through and I apologize for any disappointment. Have meds helped? If your fasciculations and cramps are getting worse I would consider seeing a GP or specialist who can prescribe meds for muscular relief. Baclofen seem to help many patients I see in the clinic.

Please note: I never said twitches combined with atrophy and cramps are not specific for a neurological condition, I said twitches alone are not specific for ALS. It is important to read carefully because information could easily be misinterpreted.

I brought up my vacation for the purpose of showing readers that anxiety can help with benign twitches. I cannot speak for you or anyone else specifically, but I am generally speaking about benign twitches that have been associated with anxiety. again, I apologize for any misunderstanding.
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
ucla2004 said:
I have noticed that too many people in this forum are putting information out of context. I researched on all sorts of information on twitches and and its presentation. And I will let everyone know that twitches alone are NOT ALS specific. I do not know how to put my message across any stronger, but twitches alone are NOT ALS specific.
Hi ucla,
It's apparant that you care about the people here and I respect that!
But if a new person asks me if muscle twitch is a symptom of ALS then I must of course, say yes! If a person says that a twitch is their only symptom then I, and the vast majority of **ahem** ol' timers on this forum will say to go see a neuro or specialist. We will say to get 2, 3 or 4 opinions. We will say to NOT self-diagnose...especially from the net! That has been my experience from my time here.

I'm not sure what posts you read where new people were informed that muscle twitch is specific to ALS, but if they're there, I'm sure glad you mentioned this!

Anyone is free to post, but if you are going to share your experiences make sure to have your information correct or else do not post.
Yikes..
This sentence I have trouble with...yes I agree to have your info correct, BUT, don't tell people not to post. We're pretty good at ferreting out mis-information and correcting it. Look at your thread as an example!

Welcome to the boards and I hope you stick around!
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
Jamiet said:
UCLA...

some of us would love to go on a trip to the carribean....good for you....but..really, it hurts to get out of bed every day ok.

We thank you for your support, but unless you've walked the walk with a real neruomuscular issue, it's hard to help. I'm sure you mean well, thx for your support.

Some of us don't feel well, are loosing weigh and muscle with no explanations while some...just have benign twitching.

Consider yourself fortunate.

Rgds.

Jamiet,

I do consider myself fortunate that God has given me 27 years of good life and health. I am young and consider myself fortunate that I can still continue to enjoy my activities of daily living. I apologize for any discomfort or harm that I may have caused to you. I was not speaking of you specifically or anyone else. My purpose of my message is for anyone who decides to browse through this site to be reassured that twitches alone are benign. I am aware twitches are seen in motor neuron diseases, but are not specific alone.

Please...this thread was intended for people suffering from only twitches, that means no atrophy or clinically defined weakness.
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
ucla:

From what I have noticed, the majority of people who post on these boards have fasciculations, but also other symptoms indicative of MND. Perhaps, I am wrong.
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
Mike27 said:
Hi ucla,
It's apparant that you care about the people here and I respect that!
But if a new person asks me if muscle twitch is a symptom of ALS then I must of course, say yes! If a person says that a twitch is their only symptom then I, and the vast majority of **ahem** ol' timers on this forum will say to go see a neuro or specialist. We will say to get 2, 3 or 4 opinions. We will say to NOT self-diagnose...especially from the net! That has been my experience from my time here.

I'm not sure what posts you read where new people were informed that muscle twitch is specific to ALS, but if they're there, I'm sure glad you mentioned this!


Yikes..
This sentence I have trouble with...yes I agree to have your info correct, BUT, don't tell people not to post. We're pretty good at ferreting out mis-information and correcting it. Look at your thread as an example!

Welcome to the boards and I hope you stick around!


Thank you for warm welcomes. I can see that most members from this site are not taking my post lightly. Again, this post was intended mostly for non-member readers and should have stated in my post. I apologize. I can only speak for myself and what I have read in the literature, but I am fully aware twitches alone are not specific for ALS. Twitches are seen more often in benign cases. I am well read in ALS and other neurological conditions and consider myself fortunate that I suffer from benign twitches as of now.

I agreee, twitches are seen in ALS combined with atrophy and cramps and along other symptoms and signs. However, I think it is unfair to tell someone twitches are a sign of ALS if you are not expanding further on other symptoms and signs that go along with it this condition. If you decide to educate someone that twitches is part of this condition, then I think it is only fair to spend some quality of time sharing your experiences with that person. Including in your response a few liners that include "twitches are seen in ALS" is consider to me insensitive, not to mention, incomplete.

My experiences have helped me to consider specializing in neurology since it is a passion of mine. I am not here to create any conflicts. I am here to help people with anxiety relief because a lot of this information that is thrown here is misinterpreted and out of context. There are thousands of people who read our post and who suffer from twitches. It is unfair to bring unnecessary anxiety to these people without all the correct information. If you would like to share with people your experiences I see no harm, but you should personally PM that person rather than throw in information that others will read and take it out of context and start to have anxiety issues.
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
ucla:

I hope you stay around and then we will have our own neurologist for free! ;)
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
vmd said:
ucla:

From what I have noticed, the majority of people who post on these boards have fasciculations, but also other symptoms indicative of MND. Perhaps, I am wrong.


Vmd,

What you said appears to be true. Keep in mind that this site is also shared with thousands of other people who only read these messages and freak out when they see that twitches are associated with ALS. Twitches and cramps are seen in other conditions as well. movement disorders are just as common as 40,000 uninsured people in the us. More common than diabetes and cancer combined. I have twitches and I think it is caused by an essential tremor, which is a movement muscular disorder. Along with these twitche I have cramp-like feelings and exercise-intolerance. At times I feel like I share some of these symptoms that are discussed in this forum. Let me share that I started freaking out because I am part of that small % of peole who happens to have twitches and blow things up bigger than what they are really are. I started to look into the web and typing in twitches. What I found was a plethora of sites of ALS. This site was a popular on on google. Wow! I was freaked out and depressed for a long time because I thought twitches = ALS. After reading and researching I am now well read and would like to help others.
 

ucla2004

Member
Joined
May 18, 2007
Messages
21
Reason
Learn about ALS
Country
US
State
California
City
Los Angeles
annmarie said:
I think we understand what you are saying about benign twitches, and I do know that some people on this board do suffer from this, and we as members can usually tell the difference in presentation. We are not doctors but we can honestly say that many people are dealing with many more symptoms than simple random twitching. Many people have cramping, clonus, stiffness, and atrophy and weakness, hardly benign conditions. While I appreciate your expertise, I do know that many on this board are dealing with more serious issues, maybe not als, but something ominious anyway. I think most people would know twitching in itself is just that, but add the other symptoms, and we may have a serious problem...

Annmarie,

Alright. I do not deny people are suffering from other omnious diseases. I am only saying that twitches by themselves are benign. If someone suffers from cramping, clonus, stiffness or any other symptom that is disabling, then I think it is a good idea to discuss these things freely. I will also post if I happen to suffer from these symptoms. I encourage to share your experiences that will help and encourage others.

You are infering that you are part of a group, from my understanding everyone shares based on personal experience. I share based on my experience just as you share from your experience. My definition of a twitch could be completely differenent from a twitch you describe. Your onset of symtoms could be completely different from others in this site. You see that everyone has different experiences and no one person could speak for anyone else. I have seen pts with ALS and know how twitches present. I have also seen benign twitches and know how they present. Therefore, twitches alone are more likely to be benign and we should be careful how we share our information with others that vulnerable looking for answers.
 
Status
Not open for further replies.
Top