please!!! Do not put things out of context

[ucla2004]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

ucla:

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

[ucla2004]

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]

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.

[patricia1]

[QUOTE=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

[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]

[QUOTE=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 dx 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]

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?

[jimercat]

"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 swallowingMayo 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 symptomsALS 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 voiceThat'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.

[jimercat]

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 dx. Someone, even if they are a med student, doesn't necessarily know all the symptoms and how to dx 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]

[QUOTE=annmarie]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

[mamaoftwo]

"if you are going to share your experiences with someone, make sure you have your information correct".

Well I have to agree with everyone else who responded and think Pat hit the nail on the head - the people here share their OWN experiences not information from a text book. That cannnot be misrepresented.
No-one on here has ever claimed to be a doctor far less an ALS specialist - in fact, if you look at Al's posts, he frequently states as much.
As someone else said, doctors need to pay attention to what patients say. Most of us, even those who are diagnosed are not text book cases. We do not conform to the ALS rules in any way and yet some of us have it.
I wonder do doctors ever frequent boards like this for the purposes of learning? So when the books say ALS does not cause pain, well the patients on here would tell you differently. When they say "ALS does not cause sensory issues", again I have read patients who say differently. Or "twitches in the absence of atrophy or weakness are benign" - read Mike's (quadliss) story - benign twitch was his diagnosis, 2yrs later, diagnosis of ALS.
So we never know, do we. All we can do is support each other while we go through this process of finding out what is really wrong.

[vmd]

janf:

As you describe your symptoms, it seems as though your fasciculations came last. Is this true? If so, it points out the diversty of chronology of the disease. Many PALS experience the fascics first, then atrophy, and then weakness. I had the weakness first, then the fascics.

[patricia1]

I read that Columbia University hospitsal would like als patients agree to have autopsy done Because the only way you can DX a positive ALS is by a Autopsy. So what does that say. Doctor really dont Know . So I think I would agree to do that for the sake of my family. Pat

[janf]

Hi Vmd Yes The First Symptons Were Foot Drop And Hand Muscle Wasting (claw Hand) If I Had Twitching I Didn't Notice And I Will Honestly Tell You My Twitching Hasn't Been Severe.

[vmd]

Thank you jan. Like you, I am certain I have ALS and could probably diagnose myself. I have many of the symptoms you have. The bulbar symptoms are especially bothersome.


Patricia:

I agree. ALS has so many facets, that it presents in many different ways. I read that some people think that the famous phycisist, Hawkins, may actually have been misdiagnosed with ALS, given his longevity with the illness.

[mamaoftwo]

I dont think Hawkins was misdiagnosed at all. Remember that the life expectancy PALS are given is if you do NOT use any assistive devices - no PEG, no vent etc. If you are prepared to do all that, I dont think there is really a limit on how long you can survive. Or am I wrong?

[Jamiet]

So how the hell can an ALS specalist tell me with 110% cetainty i don't have ALS.......when they don't konw what causes it, don't know how to treat it and don't know how to test for it.

[patricia1]

Hi guys I had the EMG and it was poss, The reason my MD wont give me a muscle biopsy is because if I had myopathy my EMG would be showing muscle not nerve problem My involves the nerves which is consistant with ALS She say my CPK would be elevated and my is Normal. So no muscle biopsey for me. I have a slow moving ALS My breathing was Normal standing and lying down aliittle below normal But have been consistant for one year and they are happy about that, They want me to use a bipap befor I need it ,because they find it keeps the breathing good longer Giving ALS patients better quality of life. I will use it at night or while lying down looking at TV She said it will make a difference. They are trying to get the insurance co to pay for a Bipap before patients have breathing issues .so keep the faith guys Pat

[Jamiet]

So, UCLA.....

I think, you've seen what actual experiences bring. While we all know you are trying to help calm people down, if you are a med student, you can perhaps spread the message of what we are telling you.

It's a sad fact, but most doctors are really disconnected? ( i guess that's the right term) from their patients and too quick to pass judgement and blame it on anxiety, blow you off, send you home to wither away.

If you are a med student, pass the message of what real suffering people go thru with doctors.

Rgds,

Jamie

[patricia1]

vmd I agree with you if you have bulbar symptoms Its ALS that why I always knew deep down it was ALS but the MD wouldnt say the word until I had atropy 5 years later. Pat

[patricia1]

I had clean ones only when there was only slurred speech Now its in my arms and the emg is poss. I would say I had about four clean ones and two bad ones.since my arms are weak and atropied. But I am lucky I am still TRUCKING after 8 years So there is always hope. pat

[ltr]

Pat - What your neuro told you about myopathy showing on EMG and CPK's is not always true. Like you yourself have said before, each neuro has their own theory and you have said you don't trust their knowledge. You shouldn't this time for sure. My CPK's and EMG's were clean for myopathy. MUSCLE BIOPSY IS THE CHOICE FOR DIAGNOSING MYOPATHY. All the research says this. Annmarie sent me some research today that says myopathy doesn't show up in most EMG's, moreso in the paraspinals and muscle biopsy is a necessity and the only proof of myopathy. Insist on it. What the hell skin is it off the neuro's back......it's your muscle.

[patricia1]

I know what you are saying but both my neuro in Philly and Robert wood Johnson in NJ said my last EMG show only nerve problem which points away from muscle myopathy.One of the neuro said "You cant go around telling MD what you want done " A muscle biopsy is very invasive and they feel stongly I have ALS I heard it from a least 4 neuros it ALS I have come to live with it. I ignore as much symptoms as I can ,and live my life to the fullest. I try to ignore my body If I listen to everything I feel or see,what goes on with my body I would go mad. If I keep busy I dont feel the twitching or the fasic But if I sit home and dwell I feel everything. So I try to keep busy. I come to terms with ALS It is what it is. Pat

[MtPockets]

Because you focused time and again on twitches alone are not usually a symptom of ALS, you may have caused some people to decide not to further investigate their disease process.

I had twitching for 2 years before I moved on to more symptoms. Yes, it was eventually dx as ALS. Most of us encourage people seeking advice to consult a neurologist who is familiar with ALS and it's progression.

I have a son who has been an ER Doctor for over 6 years and he still does not believe I have ALS because I do not fit the textbook example. My muscle biopsy as a test of last resort proved I have ALS. I was dx May 11, 2006 and now have lost all leg movement and arms are going fast.

As we have learned from those here on the forum, there are hundreds of variations of this terrible disease. Rate of onset, type of onset, Bulbar vs. limb onset, and many others to numerous to mention.

You like my son have read a book, done a little research, (we have researched this every day for years and lived it), and drawn your conclusions because your were scared you "might" have ALS. I understand that and I'm glad for you that you do not have ALS.

I hope you stay around long enough to learn more by going to the "Threads" for PALS and read of their experience. Life experience is much more reliable than a text book. You might actually learn something from us patients that will help you someday. There are too many things going on to fixate on twitches.

God Bless
Capt AL

P. S. If this was for your term paper I hope you get a good grade. :roll:

[ltr]

Pat - that's funny, you are so right, we can't tell the docs what we want done because I actually think they become offended and then you really aren't going to get it. I wasn't aware that you had an EMG that showed nerve involvement, I thought they were all clean. That certainly changes the picture. Well, you can't ever say you didn't give it your best shot.

Capt. Al - I went to my mda clinic today to be told that I wasn't really as sick as I think I am and that I really shouldn't worry about my fasciculations even though I have weakness because clinically I can still push against my neuro's hand!! Imagine that, a 15 second neuro check of "here, push your leg against my hand, here push your arm against my hand....oh, your fine"! Can you flippin believe that? Anyway, the neuro who did my biopsy said he googled his name and found the thread I posted about my biopsy that he performed. He couldn't believe it and read on!! He was amazed at what he found on this forum, many, many, many atypical patient's. I don't know how long I will be able to function, but my goal is to get a book started on this and shed some light on what is going on here. I told the doc that all of them from the clinic really could learn a lot from 5 minutes of reading this forum everyday. Hopefully, they will listen someday.

[jimercat]

Just because you still have strength to push the doc's hands away you are fine???

Man, I just don't get it! My husband can still push with legs and hands. The doc says good for you! But he hasn't sent him home with a changed dx of no ALS.

[patricia1]

I can still push as well I can pull up But I canpush out of a chair with my arms Yet I can raise them Crazy right Pat

[CindyM]

This confirms my suspicion that, by the time they can DX us, things will have progressed to the point where anybody passing us on the street can see that something is wrong. Not to hold it against the docs. There is no real test for MND, therefore they must rely on their observations. And nobody wants to hand out a death sentance based upon his or her observations unless and until it is fairly obvious to the average eye.

This is how I explain things to myself, at least. Cindy

[Jamiet]

So how can a freaking doctor rule it 110% out on me if they are not sure how do really dx it...

Quacks....sorry yall.

[CindyM]

Maybe it is easier to see that a patient does NOt have it than to see that he or she does?

[Blizna]

Just my oppinion.

IMHO UNCLA was talking about Benign fasciculation syndrome, that presents with fasciculations, temporary weakness and so on. I think his post is really good because many peoply only visit this site to find out something about their twitching and the only thing the find is ALS...so it could help them, if they dont have any other symptoms

About twitching, I thought its impossible to have twitching BEFORE any weakness, since twitch is a result of muscle reinerrvation? Also all ALS specialist think so. Too twitching on the whole body isnt for ALS - here it usually starts in limb and spread to entire body. My neuro told me twitch without any other symptoms (weakness, reflexes, coordination, atrophy..) is bening. Im twitching for a few months and hope its BFS, but of course Im affraid of ALS and every day excersises - 100 press-ups, sit ups...Im hypochondriac so I check myself every second.

I wanted to say that the meaning of the post is good - Dont let new visitors (without DX) think they have ALS if they are ONLY twitching. Only 6,7% of ALS patiens has fascics as first sign, but docs find weakness at least in one limb that these people dont notice.

On many and many places we can read that twitching alone is benign, so why scare people who maybe have this only from anxiety? (I was DXd with panic "disease" and anxiety that they say cause my twitching and tremors - its worse when Im nervous and stressed).

[guwainengle]

This forum has really educated me on my twitching issues-- I have documented its progression from twitches- to cramps- to tremors to my percieved weakenss. Without the ability to have accounts from other individuals that have the same initial symptoms that I have-- I would be too easy to convince that it is just BFS/ I know it is more neuro-muscular than what they initially told me. I have followed much advice for preparedness-- got better life insurance and disability ins. and made arrangements to be ahead of the game- if my destiny is to be diagnosed with this terrible disease. Everyone has been so helpful and most of all positive. I thank you all ! ANd believe it or not-- even UCLA has brought about a few good points and really turned a small post and statement into a giant scroll. The bottom line is that no doctor really knows until we have progressed to the point to where it is absolutely conclusive. They do not want to get sued for an incorrect diagnosis-- that is why they keep making you come back every 3 months. Too many variations/ forms/ onsets and presenting symptoms. I think the specialists shoud really read these forums. This may help them with diagnosis.

G

[Jamiet]

Good post!!!