please! Do not put things out of context

[patricia1]

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.[/QUOTE

Does it matter if people with als have benign ramdom twitches and they clear up. They still have ALS. What is your point anyway.Exactly why are you here ? :?: Pat

 

[Icanmanz]

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.

Jamie, you are my hero. That was so well said. Later, buddy!

Irma

 

[ucla2004]

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.[/QUOTE

Does it matter if people with als have benign ramdom twitches and they clear up. They still have ALS. What is your point anyway.Exactly why are you here ? :?: Pat

I am here to ease some anxiety for people who are looking for answers and are confused. If you read the forum this site is intended for people who are yet undiagnosed and who are experiencing neurological symptoms. I am not posting on the PALS forum because I am not diagnosed with ALS. Just everyone else on this forum, I also thought I had ALS at one time. Fortunately, I have available many resources as a medical student that others do not have.

 

[Icanmanz]

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.

UCLA- I have been reading your posts, and I must say to you that you are not coming across too nicely to these folks that have als or suspect that they have the symptoms. First of all, I do not believe that you have those so called twitches 24/7, unless there is something really wrong with you. Are you trying to tell these folks not to get alarmed because of these twitches? WOW! Let me tell you UCLA what I have learned from experience, if that's what you want to call it. When my son started feeling these twitches, he told me that he never felt them before. He would describe them to me, and me, well, I knew nothing about als. He had other symptoms as well, and when he went to the neuro, lo and behold, he told him it was als, and IT WAS ALS! That is the reason why he is no longer with us. Are you trying to tell these folks that the twitches they are experiencing should be ignored? Why are you doing this?

Irma

 

[ucla2004]

UCLA- I have been reading your posts, and I must say to you that you are not coming across too nicely to these folks that have als or suspect that they have the symptoms. First of all, I do not believe that you have those so called twitches 24/7, unless there is something really wrong with you. Are you trying to tell these folks not to get alarmed because of these twitches? WOW! Let me tell you UCLA what I have learned from experience, if that's what you want to call it. When my son started feeling these twitches, he told me that he never felt them before. He would describe them to me, and me, well, I knew nothing about als. He had other symptoms as well, and when he went to the neuro, lo and behold, he told him it was als, and IT WAS ALS! That is the reason why he is no longer with us. Are you trying to tell these folks that the twitches they are experiencing should be ignored? Why are you doing this?

Irma

I am not trying to hurt anyone, but I will stand up for what I believe is right. I know that twitches alone, with no evidence of atrophy of clinical weakness is not ALS. With all respect, I do twitch all the time. These experiences has helped to research further and learn that twitches by themselves are not something to get alarmed about. What would you like me to do? Agree with everyone here and say that twitches are a sign of ALS. That is ridiculous. Twitches can be caused by hundreds of other conditions.

This section of the forum is not intended for patients already diagnosed with ALS, this site is intended for people who have suspicion of being ALS. Whether it be twitches, cramps, spasms, whatever it may be I would like to share with people not to be alarmed and take things out of context. Many people suffer from cramps, spasms and twitches and turn out not to have ALS.

What harm am I causing? I know enough on ALS to teach people who have anxiety over this condition. I would like to help people who are in search of answers. Never did I say on previous posts to ignore their twitches. Read my first post and you will read that I said twitches alone are more likely benign. I am assuming my services are not welcomed.

 

[ucla2004]

I believe I respond appropriately

When I respond I select on the quote to the person I would like to respond to. This will allow others to see what I commented or could easily ignore it. I am not speaking on behalf of anyone specifically, I am generalizing for the lay public. If you feel that this section of the forum is exclusively for ALS patients then let me know so that I will never post here again. I apologize for bringing any harm. I thought there was a different section that was exclusively for PALS. Pardon again.

 

[patricia1]

You are getting your info from books We get our info from our symptoms If you have twitching 24.7 More symptom may follow.It did with me. Its a waiting game It starts very innocent sometimes,and then all hell lets loose I was Dx after 5 years of slurred speech and nothing else, and I have it 8 years.Pat

 

[Omar]

Hello everybody,

Before reading this thread I used to think that all PALS do have twitching and now I am confused. Is there any PALS who doesn't have twitches?

 

[brooksea]

"I am a 3rd year medical student"

ucla, you don't have ALS, just benign twitching.

You probably are sincere. But we can weed out those that don't know JACK! We really don't need your help with that. Sorry if I offend you, but I suppose you should have tough skin, being a 3rd yr med student.

We were doing just fine w/o your "intervention." And most of the PALS/CALS here know more about the disease than any neurologist. We have lived it.

Stop stroking your EGO.

 

[Andy2804]

UCLA,

I think your posts are very helpful and informative. I really appreciate your posts.


Thanks,

Andy

 

[Mike27]

When I respond I select on the quote to the person I would like to respond to. This will allow others to see what I commented or could easily ignore it. I am not speaking on behalf of anyone specifically, I am generalizing for the lay public. If you feel that this section of the forum is exclusively for ALS patients then let me know so that I will never post here again. I apologize for bringing any harm. I thought there was a different section that was exclusively for PALS. Pardon again.

Don't be like that...you obviously feel that you have something to contribute so please do.
But when you come into a new place swinging, don't expect the people to take it without a few shots back! What do I mean? Look at the title you chose for this thread: "please! Do not put things out of context"
Not exactly warm and inviting. It's like being corrected by a teacher.

Perhaps we should go back to the start. Could you point me in the direction of those threads that state that twitches are "specific" to ALS? I'd be interested to see.

By the way, symptoms from different orgs:
From ALSA.org-

• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing

Mayo clinic:

• Difficulty lifting the front part of your foot (footdrop)
• Weakness in your leg, feet or ankles
• Hand weakness or clumsiness
• Slurring of speech or trouble swallowing
• Muscle cramps and twitching in your arms, shoulders and tongue
• Fatigue in combination with the above signs and symptoms

ALS Center at John Hopkins:

• twitching and cramping of muscles, especially those in the hands and feet
• loss of motor control in the hands and arms
• impaired use of the arms and legs
• weakness and fatigue
• tripping and falling
• dropping things
• uncontrollable periods of laughing or crying
• slurred or thick speech and difficulty in projecting the voice

That's three I found in a couple of minutes. We know that twitching is not specific to ALS, indeed it is one of a number of symptoms that must be present in order to get a diagnosis.
In fact, as you know, there is no direct test for ALS. It's a process of elimination.

As I said before, if someone asks me if muscle twitch is a sign of ALS, I will say yes, it's one of the signs. To say otherwise is a lie. BUT, I also say to get checked out.

 

[brooksea]

Omar,

Please don't be confused by "ucla."

This is what I'm talking about: Confusion for those of us thinking there may be something other than ALS as a diagnosed. Someone, even if they are a med student, doesn't necessarily know all the symptoms and how to diagnosed ALS. You really have to go to a specialist in MND.

I feel like this is an experiment in psychology for "ucla."

I could be totally wrong.

 

[patricia1]

I agree He is fishing around. for what I dont know .Probably ego induced.

 

[janf]

i agree

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...


I agree totally Annmarie. When i had my first sympton ,which was foot drop.I had no clue, I thought I was clumsey because I was falling doing daily chores. Then came slurred speech, clonus, gait, stiffness ,atrophy, weakness and severe spasms when the twitching started it put the cap on the bottle for me. I really appreciate this forum, my friend was reading this forum and told me to start reading. I diagnoiced myself just by reading this forum, and of course going to a neurologist and then to an als clinic. Oh I was in denial but I knew I had ALS. Two yrs ago on my 35th anniversary I was lying in the sun, walking on the beach for miles,and lifting weights . August 16 was our 37 yr anniversary i was unable to even go out for dinner . I certainly was unable to have the strength to have a romantic night. I was very active, now I can't turn over in bed without help. It could be worse and i thank God daily for the little things. to sum it up unless you truly have ALS you have no clue. Jogging is totally not the ALS exercise. Anyway we are all different but als alike in so many ways thanks for everyones support and I pray for you all . This is just my opinion not meant to offend anyone. JAN F

 

[CindyM]

Gee! I take a few hours off from the forum and you guys go ahead and have an interesting discussion that takes me a few minutes of reading to catch up! That's what I love about this forum - the exchange of ideas and opinions can get really interesting.

I agree that this thread was probably started as part of some psychology experiment. I am thinking that a third year med student probably does not have a lot of extra time on their hands to spend just hanging out in a message board. UCLA- if I am right it would be fascinating to learn the results. Good luck with your studies! Cindy