still the same

[mamaoftwo]

Sorry but this had to be said again - ALS is not that rare. It is just as common as MS. Why does this "rare" thing keep coming up. i just dont get it. Is it some kind of govt. categorization of the disease? Or is it just a myth perpetuated all the time by people scared of having it? Confused!

 

[Blizna]

siuska: Every neuro told you that twitching cant be really first sign of ALS, its due to pathology of this disease. You can have almost no more signs, but you really have to have them.
If you have ALS related twitches, you have more or less weakness here - or it will follow in max. 6 weeks - those are medical facts.
But I agree there can be unexplainable exceptions

 

[mamaoftwo]

Blizna

Didnt Mike (Quadbliss) have twitching as his first and only symptom for 2 years before developing any other symptoms. I also read a book by someone with ALS - he said he had a twitch in his shoulder for 18mths before he had any other symptoms. There are no hard and fast rules with this thing unfortunately.

 

[hopingforcure]

I think everyone is correct in some way. I also have heard different neuro's say that they will watch a twitching patient for a year, if the emg remains normal, and NO WEAKNESS OR ATROPHY, or other umn and lmn symptoms are present then the person is usually going to be ok.
I also agree that if a muscle was twitching and it was a malignant reason for example ALS, then some atrophy and weakness should be found, and yes I have heard neuro's say that sometimes they think als twitches look more rolling, what I have learned is the more we know the more we dont know...Such a tough disease.. Hoping

 

[wright]

Here we go again

You guys COMPLETELY missed my point. I NEVER said that ALS can't be slow-progressing or that it can't present itself in different ways. My point was . . . and go back and read my previous post please for clarification . . . is that it serves absolutely NO PURPOSE to state things on here to already scared people when their incidence may have nothing to do with ALS. Jeff (zen archer) wants facts: well then prove to me that the twitching that someone has, for seven years prior to being diagnosed with ALS, had anything to do with ALS. It can't be proven. So since it can't be proven, there is no reason to state it to someone who is thinking they might have ALS because they are twitching. So this person will twitch for a year and then have to now worry for the next six years, that they really have ALS . . . when in all likelihood, they don't. I'm not going to restate the other things I wrote in my previous post, because you can just go look for yourself.

And I respectfully beg to differ with you mammaoftwo: ALS is rare. Only 5,000 to 6,000 people are diagnosed with it each year in the United States (that's according to the Mayo Clinic and John's Hopkins stats). That is rare. That's the reason there hasn't been as much research done on ALS; it's just not that common. I was a scientist for nearly a decade, so I know how the game is played, and unfortunately, the money goes to more common diseases. According to the Red Cross: thousands of people are struck by lightning each year. That means you have just as good a chance to be struck by lightning as you do to get ALS.

Once again, I'm not trying to start any type of conflict on this site. I'm just thinking about the people who are frightened of having, one of the most frightening diseases on this planet.

P.S. About the research thing: we can change that a bit by making the public more aware of ALS and putting pressure on the government to devote more money to the disease. Jeff's website is a very good start. I applaud you, by the way.

 

[pldo]

Boxer,

I too have been about the same for about a year and a half except sometimes I have more shortness of breath then I have had in the past. I think that you and I were on here at the same time in the beg. How is you son doing?

 

[Cornelia]

As far as I am aware weakness will precede twitching in most cases. Only rarely will
twitching precede weakness. An EMG can be performened and it will show denerveration even before weakness and athrophy. So in my thinking if Boxer has
been twitching for a year, had a clean EMG, no signs of weakness or athrophy chances
are she is in the clear with ALS. So with all due respect I think in some people who
say they were twitching for years and then developed ALS, that something else was
going on. Like if for instance you developed arthritis, it does not protect you from
getting cancer down the road.

Oh and by the way Boxer that mucus in your throat, 3 things to consider, it could
be an allergy, it could be gerd (being nervous thinking you are dying and leaving your
infant behind could do that), it also could be a slight hernia. Try propping some pillows
under your head when you sleep.

 

[Vicki S]

No Change

Hi, I went to Birmingham Wed for a checkup with my specialist DR,OH. He tested me and said haven't gotten worse since last year when I was diagnosed. He also wrote a perscription for Lithium. I just started it.

 

[Vicki S]

I didn't start twitching until I was diagnosed. Now I only twitch when I'm resting. I think it feels funny and I make a little of it.

 

[siuska]

freaking out

i agree with Wright on several points, but i also agree with Zen....
1. ALS is RARE
2. The way to a cure is more research and public awareness
...there is a bill coming before congress (ALSA DOD) that would behoove everyone on this site to write thier congressmen (women) in support. (for more info go to general discussion)
3. noone knows what causes ALS or how to cure it and so it is the last diagnosis to be made...twitching is not always benign, but usually... neuros watch the twitchers (case in point) my neuro showed me what a typical ALS twitcher looks like (rolling)
4. true, twitching with weakness is typical, but there are (thank god) slow progressers and some that start with just weakness and some with stiffness,pain or clumsiness.....with no twitching...
5. i repeat :ALS is rare compared to other CNS
for all you twitchers, don't grab onto this one symptom and automatically classify yourself...and even if you are like me with atrophy, well lot's of stuff causes atrophy-you can fall down and damage your nerve endings...don't freak until you have to...
6. could twitching be in the relm of possibilities? yes, but it is an OUTSIDE possiblitity

 

[wright]

To Lorie

Please don't think I was attacking you or singling you out, because I certainly was not. As I stated, my concern was with the people on here in fear of having ALS. You are a vital part of this forum, as are so many other people. We're all here for the same reason: support of each other. I guess even the closest of families have a slight "tiff" from time to time.

P.S. You asked about my profession: I am a professor that teaches anatomy and physiology in the nursing and medical schools at a university. I have a Master's degree in physiology and a Ph.D. in biomedical sciences. I was a scientist for almost a decade prior to switching careers. I knew about ALS and actually included it in my neurophysiology lectures, but I was by no means even close to being an expert. I knew enough about it to scare myself with the symptoms I had/have . . . but didn't know nearly enough to relieve those fears. I have been told by three neuros that I don't have ALS, but I'm still not 100% convinced (99.9% . . . but not 100%). It's just difficult to let go because of the stress and anxiety I put myself through over the last three months. I know I have to change my attitude so I can move on and relieve those fears. All of that time, I was needing someone to prove to me that I didn't have ALS. I need to change that attitude to: prove to me that I do have it. I concentrated on those symptoms that pointed to ALS and somehow ignored or managed to dismiss those symptoms that excluded that diagnosis.
One more note: these last few months I relied on this site to get me through and the people on here so graciously gave of their time and support. I am forever grateful and I will remain here to lend my support of you all and to others who will surely visit in need of help.

 

[CindyM]

I rely on this site to help get me through, too. My problem was that I had 3 local docs telling me that all my symptoms pointed to ALS. They sent me to the clinic to confirm their suspicions, and the AlS specialists said, quote, “I promise you this is either MS or Lupus.” Well, the spinal fluid analysis was clear, so he revised his prediction. He now says it is neuro-muscular, and I may stay the same as I am but I should prepare myself for getting worse. All of his pronouncements did not exactly make me feel warm and fuzzy. And he never should have promised me I had a less life-threatening disease, because it is very hard to shake the feeling, lo these 24 months later, that something is really wrong

Coming here helps me maintain perspective. I see Rich with his new baby, Liz who takes care of 4 kids and a job every day, AL who maintains a great sense of warmth and humor, and I meet all of you PALS and CALS who live your daily lives with never a “poor me.”
I am grateful to you all.

But there is a grain of truth in what Wright says. Some people are more anxious after coming here. I see the new baby and think, “Wow. What love.” Others are reminded that, because they twitch, they may not get to see their kids grow up. I think we cannot change this viewpoint. There will always be people who see the glass half empty. I guess we can make an effort not to feed into their fears, but at the end of the day, they will be about as happy as they make up their minds to be. JMO

 

[Lorie]

I will leave it to the Experts, here!

Ok, so the post I made was from the ALS association. They are wrong. I will have to let them know that when I meet with them Monday. Tim's Neuro.'s is wrong to, I guess. In the muscles that Tim still has, he has Cramps and Twitching. The Neuro.'s say all along that it is a part of Tim's symptoms of ALS.

I need to go call Tim and tell him, his early symptoms was not from ALS. I wonder what he will think about that?

I am also going to copy all of this and E-Mail to my friend Bert. 25 years/ALS.
See what he thinks!

The one thing I have never have done on this Forum is tell someone they have ALS. I also do not provide false information. I have always positive and try to lift people up.

I never said Twitching for everbody was ALS!

I am Done!

 

[wright]

It's amazing to me how some people just don't get it. Who on this forum told you that your brother doesn't have ALS and that his cramping and twitching that he now has, isn't related to ALS? All I said . . . and others on this thread . . . is that there is no proof that his twitching that was going on seven years ago, was related to his present condition. I'm now done. I hope everyone else is too.

 

[Lorie]

How do you know it wasn't?

Do you have proof?

Taking Time Off here! No some people don't get it. I guess I am just one of the Dumb ones, without a paper degree!


Lorie