still the same

[boxer22]

Hello agian everyone, Everything is still pretty much the same with me. Twiching everywhere including my tongue, it hasnt got worst but it sure aint got any better. The twiching has been about the same for a year. I still have to clear my throat everyday, mulitple times because of the stuff that i just cant seem to ever get down, thats more annoying then anything!!! Still brisk, still have a tremor when trying to do something with my hands that requries a little bit of force. Any body else with these same issues? Any advice? Thanks you guys!

[Sanders915]

Any weakness? or atrophy? if not would say you are doing ok, after the lenghth of time you would be much worse off, you can twitch anywhere, in any muscle, and brsik reflexes go with that often. How brisk were you reflexes? did you have jaw jerk and clonus, those things could be much more telling. Dont worry, just ask and see if we can ease your mind.

[Lorie]

I am not a Negative person, just knowledeable. My brother Tim had Twitches and Cramps for seven years before ALS was suspected. No Atrophy or weakness until right before DX. Due to slow progresssion. Dx in March of 05. Everybody has there own Journey. When the symptoms get bad enough a Neuro. Familiar with ALS can consider ALS or Rule it out or send you to a specialist. Sometimes it can take what seems like forever. I don't think I would be so quick to make that judgement. Just stay aware of any changes. See the Neuro. often. Unforunately there is not a quick way to get a Dx unless the symptoms or progression is just that bad.


Just a little info!

Lorie

[wright]

Hello Lorie and all who will listen

The twitches and cramps your brother was feeling for that length of time probably had nothing to do with ALS (seven years of twitching is an awful long time to twitch before you get ALS). I keep seeing similar things said on here . . . and I think it scares people for no reason. It's as if PALS are completely immune to every ailment on the planet. That just simply isn't true. So if someone is seeking advice on here and giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible to tell them that you know of a PAL that has such a symptom, but it truly has nothing to do with ALS. Example: if someone is on here and says they have blurred vision . . . or ringing of the ears . . . or headaches . . . or anything else that isn't a symptom of ALS, then they need to be told that. Don't reply by saying that you know of a PAL that has blurry vision, because it just doesn't have a thing to do with the disease. That is simply a PAL with blurry vision. End of story. I bet everyone that has gotten ALS watched television . . . or drove a car. Does that mean that watching television or driving a car causes ALS? Of course it doesn't.

Bottom line: you can't look back on things and assume that they all had something to do with the development of ALS or any other disease and you can't assume that just because a PAL has some unrelated symptom to ALS, that all of a sudden that symptom is now attributed to ALS.

Lorie, I also want you to know that I wasn't trying to be mean or negative to you (or anyone else on this forum) in this reply. There are a lot of scared people out there that think they might have ALS and chances are, they don't. We shouldn't feed their fears needlessly. This forum is amazing, as are the people on it (you included, Lorie). I myself don't know what I would have done without it.

[Cornelia]

Thank you Wright, you took the words right out of my mouth. I think 7 years is a
long time to have twitching and cramping, before any other symptoms of ALS show
up, since ALS is mainly an illness of weakness. As far as I have read, weakness will
precede twitching, in the majority of cases, or at least go hand in hand. ALS is
rare, twitching before weakness is rarer still. Take heart Boxer 22, I think you
probably have BFS. Enjoy that cute baby of yours and don't be afraid. Cornelia

[siuska]

i twitch and cramp, but i have peripheral neuropathy...i think my twitches are different than Pals, as the twitching seems to migrate all over the body and are pretty violent at times...i even twitch in my diaphragm which is pretty disconcerting at times...

[fmarino]

Hello siuska

You say you don't twitch like a PAL: how do PALS twitch and what makes your twitching different?

You also say you have peripheral neuropathy: do you know what kind and what is causing it? Do you have any sensory symptoms?

I'm not sure if you have read my post, but do you have any idea what I might have?

P.S. Thank you so much for what you said Wright. I think it needed to be said and I'm glad you had the courage to say it. I am one of those people who are scared right now.

[CindyM]

As long as we make an effort to be considerate of each other's feelings, we are on the right track. And Wright did express his esteem for everyone, which is what makes this forum one of the best on the internet, imo. :-D

[siuska]

no sorry F,
i wouldn't have a clue what you have...i'm not licensed to practice medicine over the internet...My twitching is not like Pals which is more 'rolling' type...mine are very strong, brief and body wide...more like a BFS-really annoying now, very scary when i got them because like you, my first thought was ALS...and what really scared me about ALS was the financial ruin i'd be facing, that and i wouldn't have a primary care-taker...it took some time and lot's of money and different neuros before i got a diagnosis...you could probably start your journey with having your GP send you to a major university hospital for testing...they will do MRI's, EMG/NCV tests along with lot's of blood tests...cymbalta helped me for the cramping pain....which was disabling and prevented me from work for about three months...it took the cymbalta and physical therapy to get me back on my feet...the doctors don't know why i have peripheral neuropathy or how i got it so quickly...i had a partial finger amputation (accident) six months ago that might have stirred up some CNS issues...at this point, they are still trying to figure out the type and underlying issue of PN...i also have a pituitary tumor so maybe some hormone fluctuations are kicking the CNS switch on....oy veh, lot's to keep track of...so see?
Everyone's body is different, and your problem could be anything....i wouldn't consider ALS at this point...go into this journey with an open, positive mind and persistance. Make sure that you get copies of your medical reports and talk to us here about docs and different medical centers...CNS of any type can be hard to diagnose and time consumming so many of us here have experience with not just one, but several neuros, rheumos, endos, ect...

[ZenArcher]

The thing that bothers me the most is conjecture. I don't mean to be argumentative (well not too much) but show me where 7 years is a long time to have symptoms without weakness. Be ready to defend it to because I have evidence showing the opposite in the form of a letter from my neurologist. Let's face it nobody can tell you what's normal or how fast or where or how or why. Hell the diagnosis itself only means that you have these symptoms and nothing else is causing it.

The diagnosis of Amyotrophic Lateral Sclerosis [ALS] requires:
A - the presence of:

(A:1) evidence of lower motor neuron (LMN) degeneration
by clinical, electrophysiological or neuropathologic examination,

(A:2) evidence of upper motor neuron (UMN) degeneration
by clinical examination, and

(A:3) progressive spread of symptoms or signs within a region or to other regions,
as determined by history or examination,


together with
B - the absence of:

(B:1) electrophysiological and pathological evidence of other disease
processes that might explain the signs of LMN and/or UMN degeneration, and

(B:2) neuroimaging evidence of other disease processes that might explain the
observed clinical and electrophysiological signs.

That's taken from: http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm

So here is a simple fact if you don't meet the requirements above then you do NOT have ALS at this time. I would also like to know where it says that weakness precedes or goes hand in hand with twitching. My understanding is that fasciculations are caused by neurons beginning to lose connection to the muscle when they die and as neurons die neighboring neurons will branch out and try to pick up the slack. This continues until at some point there simply aren't enough neurons to cover the muscle at which point it will begin to weaken and atrophy. That would mean that dependent on the rate of neuron death the time between neuron death, weakness and atrophy could be months or years. I work with an individual who was diagnosed 9 years ago and doesn't even use a cane to walk which proves that progression can be extremely slow.

I guess my point to all this is: Facts.

[givenin]

My husband experianced cramping in muscels for years with sporadic twitching then about 2 years ago the twicthing increased along with muscel weakness fairly quickly so when we went to see the first Neuro she was sure what it was before the tests were done. But you still have to cover all else there are allot of other things that have similar symptoms the same as ALS.

Hang in there.

[Lorie]

So if someone is seeking advice on here and giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible to tell them that you know of a PAL that has such a symptom, but it truly has nothing to do with ALS

As far as I have read, weakness will precede twitching, in the majority of cases, or at least go hand in hand. ALS is rare, twitching before weakness is rarer still.


Initial Symptoms of the Disease:

At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

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
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression.

Wright:I am not trying to scare people. I am not going just on one PALS symptoms. If you were familiar with me, not only do I know a lot of people on this Forum. I know people with ALS ouside this Forum. Bert I know with ALS for 25 years, on Life Support for 5. He can still type with his toes. In your conclusion I would think he couldn't move by now. My brother was Dx in March 05. In June 06 he lost total use of his arms. His arms dangled (like a puppet, figure of speech) for 1-1/2 years before his legs started getting weak. He still has some use of them. He can talk well and eat. In your theory,whouldn't He and Bert be long gone by now. They have beat the odds. Or am I being factual about the slow progression. ALS is not new to me. I read on your profile that you are interested about learning about ALS. Not that you have ALS. Are you a Student/Doctor What?

If a person is Dx with BFS what are they doing on an ALS Forum, if they were not concerned about ALS?

"giving symptoms that truly have nothing to do with the etiology of ALS, I think it's irresponsible"

Should I say more?

Lorie

[siuska]

Zen is right, time will tell all...but, i also want to mention that twitches might be axons snapping dead away or, just irritable nerves...there a lots of BFS'rs out there that never get ALS...and there is a lot of nasty CNS stuff that isn't ALS...
i hope this new government we are going to get actually gets serious about research...and getting our toxic environment cleaned up...check out:
http://www.scorecard.org/ to find out what neurotoxins are in your neck of the woods....

[Blizna]

Lorie,

its medically impossible to have twitching 7 years before developed ALS. Twitching is caused by reinnervation, and reinnervation takes places when muscle starts dying. Thats why muscles twitch until they are completely away.

In ALS, its possible to have cramps a few months before, since its sign of beginning nerve damage. From what I read very rare is have cramps more than 8 months before DX.

Those pages who claim that first sign can be twitching are wrong - every person who said he had only twitching was told by neuro that affected limb does is weaker or rigid. The problem is, that in some muscles you dont have to feel its weaker. Clinally, you cant have twitching caused by ALS in absolutely healthy muscle, and if so, then weakness has to follow very early.

Your brother could have benign twitches, with cramps nobody knows, they can precede...

But after year of twitching Boxer can be pretty fine, beucause he doesnt have ALS.

[siuska]

i disagree with Blizna...one can have twitching first as a sign of ALS...and one can have it for awhile...there are no hard fast rules on the emergence of ALS...but, i don't want to cause any anxiety out there unneedlessly, so i want to state ALS is Extremely RARE...there are hundreds of things that cause Twitching....my Neuro has a condition that if he bumps his muscle it looks like a can of worms swirling around underneath- had it all his life!!!
i kinda wanted to ask him if ALL his muscles twitched like this, but uhh, then that would be kinda personal!!!

[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]

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]

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]

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]

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]

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]

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]

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

[CindyM]

Well, sometimes emotions run high around here but it is now wonder, considering how much we all have on our plates. But as far as controversies go, this one is rather tame, as far as I can see. Lorie always says we are are a family, and in any family there are discussions...And the PM system seems to work fine for folks that have private matters to work out between each other. All in all, I think we are OK. At lest I hope we are.

[CindyM]

Lorie- my post crossed yours, or I would have responded differently. I did not realize we were getting on your nerves so much. I am sorry you are offended. We still wish the best for Tim, and you and your husband and daughter. I hope things look better to you in the morning. If not, please PM me! Cindy

[ZenArcher]

I had localized twitching and cramping in my left hand which started in 1999 - 2000 and continued. In 2005 it progressed to the point where I was losing dexterity. In 2007 it began to show signs of atrophy and I was diagnosed. I've got a letter from the ALS clinic stating that the cramping and twitching I experienced in 1999 - 2000 were more likely than not the initial signs of ALS. Proof, no, coincidence, if it is it's a strong one.

I do understand your point although I believe that there are things which can be argued. Until the etiology of ALS is known there is no way for us to prove or disprove any of this which means you saying twitching 7 years ago isn't related has no more power than me saying it does. I can however lend some substantiation to my point given the above time line. Personally, I don't normally respond to the Do I Have ALS? threads unless it is questions like what's an EMG or some such simply because it is to subjective and I'm not a neurologist. Having said that neither are you but you don't believe three others who say you don't have ALS. So you have no proof that you have ALS and yet there is still a part of you that believes it while two of us that do have ALS have related personal experiences with at least coincidental evidence and backing from experts and you oppose. What's that word....hypocrisy?

All right last bit, wright I understand and at least in part agree with your point however your timing was awful and your phrasing could be construed as personal. I respect Lorie on many levels and as such will come to her defense which in this case she obviously felt like she was being attacked. I don't believe that was your intention but as I said your timing was awful. I will be more than happy to discuss/debate this further, just send me a PM.

[wright]

I have to let you (Jeff) and Lorie know that I respect both of you. Again, my intentions were not to hurt or offend anyone. I was simply trying to lend a hand to those on here that are scared of having this disease. I truly did not intend for any of this to happen on this thread. Lorie, I sent you a PM some time ago and Jeff I will send you one as well.

P.S. I wouldn't call my continuing concerns about my health, hypocrisy . . . but rather . . . a slight fear of the unkown, because none of the three neuros have been able to tell me exactly what I have. All they have said, is that are fairly certain it isn't ALS, but as you know, they can't tell me with 100% certainty . . . 99% certain is what they have all said, which is how certain I am. It's the 1% that continues to play with my head. I've put myself through a lot these last few months and still haven't completely calmed myself from that trauma.

The best to all.

[DonnaJ]

My best to all as well. I'm sitting here at the computer listening to my husband try to gag and choke down his breakfast. I believe that boxer22 or any of us when we first signed into this forum make a choice to do so. We are all adults. We make that choice. What we read is our choice. What we take from it is our choice.
We are all scared to death-Patients and caregivers of the UNKNOWN. Boxer22 I wish you well as I do all, but you will read the good, bad and the ugly of ALS on here. But, take that information along with your doctor's care and YOU (as all of us) do what's best and what you can with the UNKNOWN.

With tears, I hate this for ALL of us whether its ALS or NOT. I read everyday on here and everyday I read a story of someone's situation and it's like I'm reading about myself and my husbands life. It's all surrell.

Love to all,
DonnaJ-WV

[Cornelia]

Jeff I wanted to ask about your twitching. When this all started for you did you have
an EMG done? What did the Dr.'s diagnose you with, or did they not give you one.
You say you had localized twitching, so as I understand it the twitching took place
in your hand, not your whole body. Please I do not mean to disrespect anyone. It is
just that I read so many different things it gets confusing. I did read that localized twitching is more of an indicator for ALS than body wide twitching such as Boxer
experienced. Did the twitching ever go away or was it constant for you. It is a
terrible disease I can well understand Wright's anxiety as for not believing his neuro.
I started down this road because my Dr's PA told me I had an MND and I asked her
what are you talking about and she told me ALS. I then went to a neuro who specializes in MD, who told me no ALS...all anxiety. On good days I believe her
but on days when I twitch and my voice cracks I don't. Cornelia

[ZenArcher]

Cornelia, well before I go any further I would recommend that you go back to that PA and calmly reel back and break their nose. There isn't a PA out there that has the training, the equipment, the knowledge or the right to make a statement like that. OK don't break their nose unless you're ready for the legal ramifications but I'd definitely give them and the doc a piece of my mind in front of one another right before I asked for my records and never came back. Enough of that and on to your questions. I had twitching and cramping in my left hand in the '99 -'00 time frame. I worked in electronics at the time and I remember my hands cramping up when I was trying to work with small tools. I figured it was because I was trying to work with small tools. Because of that I never went to a doc. The twitching was on and off and the cramping usually only happened when I exerted or overexerted. In 2005 I started having problems with fine motor skills in that hand. I had problems threading a nut onto a bolt but I thought my back was out. I had a buddy crack my back and an hour or so later it would work although not as well as the right hand. That continued until Feb 2007 when I had problems holding a plate with my left hand at a buffet. OK, interfere with my work no problem but interfere with my eating!?!?! I had to get to a doc. I did my own research online and had an idea. I went to my GP who did the normal neuro tests and pointed out the atrophy in the thenar muscle in my left hand which I hadn't seen and asked me if I had any idea what it could be. Well let's see, I had weakness, atrophy, fasciculations and clonus so I told him it could be ALS to which he agreed. Next was local neuro and EMG/NCV which showed damage in 3 regions. Next ALS clinic with a repeat of damage in 3 regions and nothing in blood or CSF. Next I officially joined the distinguished community of those about the kick the $h!t out of ALS :)

[fmarino]

It seems to be a common theme on here and from what I've learned elsewhere, that almost all people who have ALS were truly unaware anything was going wrong until a foot drop, not being able to stand on their tip toes, not being able to turn a key, etc.

It also seems that the atrophy is very, very slow (initially at least). So is that the reason no one realizes what is going on . . . coupled with the fact that there are no real sensory symptoms? Jeff seems to be someone who would be "aware of things" and for someone like him to all of a sudden notice that he can't turn a screw and not notice the muscle on his hand disappear, seems almost unfathomable to me.

Maybe I'm so aware of my weakness and atrophy because I have so many sensory symptoms and "weird" sensations in my legs. I guess because it happened so fast to me (atrophy of muscles in less than 2 months . . . not severe atrophy, but there is definitely loss of many muscles in my arms and back) would also allow me to realize it more.

Al also said that his leg weakness was just his legs getting tired and there was no "weird" sensations to go along with it.

Am I correct in what I'm thinking?

[Cornelia]

Jeff, thank you for your reply. I hope you do kick the **** out of ALS. Yes the more I
think about that PA the madder I get, but it is too late, the seed was planted. I also
think given all my symptoms it is more than just anxiety, although I am pretty anxious at this point. What I am trying to do is change my thinking. That no matter what it is, to make the best out of everyday. To not let fear overwhelm and paralyze
me. There are many people on this board that seem to have accomplished just that.
an amazing feat given the circumstances, especially as they are much worse than mine.
In April it will be a year that all of this has started, and I was hoping that perhaps after
a year and no weakness and athrophy I could feel somewhat reassured. Cornelia

[ZenArcher]

Frank, you've made quite a few assumptions in there that may or may not be true. Firstly stop trying to compare symptoms is serves no purpose. There are so many different combinations of progression rates, initial symptoms and disease paths comparison is useless. Secondly, sensory symptoms are NOT indicative of ALS. Like I said before if you don't meet the criteria here (http://www.wfnals.org/guidelines/1998elescorial/elescorial1998criteria.htm) you don't have ALS. Does that mean you'll never get it...no but considering that ALS affects 0.01% of the U.S. population it's a safe bet. Actually almost 10 times as many people die from auto accidents every year but I'm willing to bet you haven't sold your car yet. Cornelia that last part goes for you as well.

Life is what it is, you can spend it worrying or living. Personally, I chose to live it and I'll see what tomorrow brings tomorrow.

[Peg B]

Hi,

I want to respond to is the fear - for Cornelius and others - "What I am trying to do is change my thinking. That no matter what it is, to make the best out of everyday. To not let fear overwhelm and paralyze me."

I agree with Jeff, and my ALS story is much the same, except that I am still being tested for MMN, as the second opinion to ALS DX. My right hand cramping started early in 2002, and my finger began to bend. It stopped moving in 2006, I fell many times. Oct 31, 2006 ALS DX. ALS clinic Dec, 2007 EMG 3 limbs positive for ALS, blood work no problems, but I have been on IVIG since Jan 2007. I may go off after another EMG/NVC due to a bit more progression anyway. Twitching in right hand started a few years ago - don't remember when. My progression is super slow.

That being said, the reason I am writing is about fear: MY youngest sister died at 22 - car accident (graduated as a teacher, posthumously 3 months later.) I lost 6 years in mourning, stopped my masters, delayed having kids etc. etc. What was the point?

I healed - moved on when I became grateful for her. All of my mom's siblings died of cancer before age 60. My cousin died of cancer. My mom had Parkinson and cancers (2) died after 5 years of dementia and cancer. My oldest sister died after living with /fighting cancer for 12 years(breast to bone cancer). My other two sisters are breast cancer survivors (11 years and almost 2 years.) I don't have it. - my annual tests are this week.

Two weeks ago my husband was DX with prostate cancer. He will have surgery on April 2. My sister has surgery April 1. Please put us in your prayers also. Again I see, and in my most sincere and humble way, I pray for gratitude. So much of life is not in our control, but gratitude may be. For us we have two wonderful daughters and a new wonderful son in law. Our daughters are college grads, and both are back to get their teaching degrees. I had 36 years of teaching, and finished an Ed. Specialist and1/2 toward the Ph.D, before I had to stop. My husband got to be the home parent.

So I wish for you as you go through finding what's wrong that you can note everyday what is right and open yourself to peace. I wish you all a very blessed Holy Week. Sincerely, Peg

[boxer22]

Wow, I really did not intend to make this such a controversial thread. I was still a little concerned about The Als issue and wanted to get some advice, so thank you all who responded. I am not a doctor nor am I someone who knows all of the facts about ALS but I think that we can all agree that so many diffrent websites,doctors,books, and etc say so many diffrent things!! One say twiching comes first another says the oppesite. So its really hard to understand any of it. Some of you asked about weekness, yes I feel that I have some in my arms. Can't hold them up as long as i use to. I even get tired when turning the radio in my car. But agian, could this just be me not working as hard as i once did. Maybe i am not using my arms as much as i should be. I don't really know. I really hope that after a year of twiching/cramps staying the same that it is just BFS. Thank you agian for all of the replies.

Ashley

[Cornelia]

Peg you have gone through so much. I hope that all will go well for your husband. I
will tell you a story about my cousin, his name was Tobias, he was a quiet boy. A little
shy, but once you got to know him he would open up and he was a wonderful kid.
He wasn't handsome in a conventional way, but he had beautifull eyes. He didn't
smile often, but when he did his whole face transformed, he became so heatbreakingly handdsome. He was an exceptional soccer and tennis player. When he was about
14 years old he developed a pain in his arm and his arm went numb. His parents took
him to the Doctor, and they knew right away what it was. He had a very aggressive
neuroblastoma. He went through radiation and chemo but nothing could stop the
progression. Precicely because his young body was full of growth hormones, his cancer fed off them also He would try to be brave when is parents came to the hospital to see him, especially for his Mom, but when they left he would cry. I know this from a nurse who was a friend. He would tell his Mom, I am going to beat this. He died 2 years after
diagnosis. At the end he was blind and imobile, he convulsed and he was so sensitive
that he was tied spread eagled and naked to his bed, for he could not tolerate the weight of the bed sheets on him. He was sixteen years old. I don't know how his
parents endured this, words fail me.
I know we have no control over our lives, but how to find acceptance for the unacceptable. Cornelia

[Lorie]

My post about Twitching/Fasic's was taken totally of of contex. If someone assumed that I was saying that Tim only had Twitching/Fasic's for seven years, that meant he had ALS. Was Wrong. Tim had Cramping and Weakness. So we get strait to the point. If Tim had not had a quack MD that fed him meds for years that kept him coming back for more. Instead of sending him to a Neuro. He would have been DX sooner. I am trying to sum this up as simple as I can without a long drawn out story.

Never did I say if you have twitching for seven years, you have ALS. Never would I. I would not have the right to do that, nor would anyone else.

Everyone has their own Symptoms and Journey that have ALS.

I am not posting to this Tread, again.

Lorie:-D

[CindyM]

So I wish for you as you go through finding what's wrong that you can note everyday what is right and open yourself to peace.

Peg- amazing insight for someone who has so much to worry about lately. I wish you and your hubby well!! Please let us know how he is doing.

[Peg B]

Thank you Cindy. I have a book called Gratitude. The object was to write down 5 things everyday that one was grateful for. I think it is a helpful idea as it helps to change the focus of thoughts. Again thank you for your kind words. Sincerely, Peg

[Peg B]

Hi,

Cindy and Caroline, Thank you for your wishes re: my husband.

I have a book called Gratitude. The object is to write down 5 things everyday that one is grateful for. I think it is a helpful idea as it helps to change the focus of thoughts.

Cindy also thank you for your kind words. Sincerely, Peg

[CindyM]

And thank you, Peg, for your courageous reminder that we can change our thoughts. I see so many posts from people who feel they cannot stop worrying about the future, I am sure it helps to know that people with MND can, and do, decide to let go and get on with life.

[Cornelia]

I am sorry Peg, I never really thanked you for your kind words. In the middle of what
you must be going through. I am sorry for venting about my cousin, it was misplaced:oops:Cornelia

[Peg B]

Hi Corneila,

You are most gracious. No need to apologize. I think Cindy said it best. We can change our thoughts and they truely are easier than anything else to change.

Take Good Care and Happy Easter/Spring. Sincerely, Peg

[Mand406]

Hi,
I have a question for those of you familiar with the symptoms of ALS.I am a 27 year old female,who has had a minor problem with my left foot for about 3 years.It tingles when I rub it with pressure,my toes feel sort of numb alot and I twitch in it and both of my calves quite often.My REAL concern is I have been having alot of twitching here and there around my mouth for a month or so,but a week ago,I woke up to my tongue twitching!!It has yet to stop,I can see and feel these,and they are just as one user here described her husbands tongue twitching.It feels like a pull and release type thing.But,my tongue is very strong.The night before it started,I did feel that my speech was sort of "thick",but that went away.I can move my tongue and swallow fine.It also feels as if the muscle in the side that oes it is knoted up a little bit.Does anyone have any input on this,as I am scared to death!!
Thanks!

[CindyM]

Hi Mand- we prpbably can't tell you for sure since none of us are doctors. Have youseen a neurologist? Yhere are about a hundred different diseases that ahve these kind of symptoms, and most of them are treatable. good luck and let us know how it goes! Cindy

[Mand406]

Thanks for the response,I am trying to get a neuro appt. now.Also,when I stick out my tongue,it has ripple like edges on both sides,isnt that atrophy??So there ae other things that could cause constant tongue twitch,and twitches throughout the body?Thanks again for your response Cindy...Do you have Als?

[Peg B]

Hi Mand,

Cindy is right. None of us can diagnose for you. I was DX with ALS, Oct 2006. But it looks more like I have multifocal motor neuropathy MMN. There are so many things most of us never heard of until we or a loved one gets symptoms. Please keep yourself as calm as possible and see what the doctors say. Best wishes and God's blessings. Peg

[Mand406]

Hi Peg,how old were you when you were daignosed?Thank you for your response!
Also,just wondering is it commom toget ALS in your twenties?
Thanks!

[jimercat]

It is very UNcommon to get ALS in your twenties, but not unheard of.

[Mand406]

I noticed you said your husbands tongue was JUST like mine is,but I can feel it...I have had twiching off and on for 3 years in my feet that is constant now for weeks,my tongue straight for 2 weeks....Is your husbands constant,always there?Has he ever felt any of the twitching?Also,can he move his tongue around good?Now today,my finger /hand has started and wont stop.I got my blood drawn yesterday.Im really worried because I even have the scalloped look to my tongue.My doc somehow thinks that is not ALS....could this really be anything else??Thanks you guys for all your kind words!

[wamjr1002]

I noticed you said your husbands tongue was JUST like mine is,but I can feel it...I have had twiching off and on for 3 years in my feet that is constant now for weeks,my tongue straight for 2 weeks....Is your husbands constant,always there?Has he ever felt any of the twitching?Also,can he move his tongue around good?Now today,my finger /hand has started and wont stop.I got my blood drawn yesterday.Im really worried because I even have the scalloped look to my tongue.My doc somehow thinks that is not ALS....could this really be anything else??Thanks you guys for all your kind words!

Those ripples in your tongue could be from anything, probably some kind of nutrient deficiency but could also just be normal. Are you biting your tongue when you eat? difficulty swallowing? slurred speech?

[jimercat]

Mand,

Have you seen a Neuro yet? Most GP's are not familiar with ALS enough to dx.

[Peg B]

Hi Mand,

As a matter of fact most Neurologists have not dealt with anyone with ALS. It is super extremely rare - MMN is rarer still and hits men 3/1 as much as women. To answer your question I was 58 when I was DX with ALS, but was 53 when I first noticed symptoms. Two neurologists said it was not ALS or MS. That was in 2002 and 2003, and I did not see a neurologist again until I could not move one finger at all and an orthopedic surgeon, a hand specialist, sent me to a neurologist who did have experience with ALS. That was in 2006. He sent me to the specialists in ALS and she said possibly MMN, but after a year and a half they are not totally sure which one I have, but my progression is very slow.

ALS is extremely more rare in the 20s. Please note: my youngest sister died almost instantly at age 22 in a car accident. It taught me to live at least a semester at a time and to try to do "one day at a time," thinking. I was 28 when she died. I have outlived my oldest sister by 2 years so far. She had 12 years living with cancer. There is no time in life to worry.

What has the neurologist said? Please live it while you got it. Take good care. Peg

[Mand406]

Hi guys,
I still havent gotten to the neuro,it will be about another week,I had felt like my speech was slurred the night before the twitching started,and had bit my tongue a couple of times here and there.My doc says you can have 1 or all symptoms of something,that doesent mean you have "that"..So I understand that it would be VERY rare for me to have it at my age,and hopefully when I get my bloodwork back it will tell something,and I will be taking it one day at a time..It did make me feel better knowing that my doc has had a patient with ALS before,but thanks for all of you being here for me!!

[Mand406]

So,does it sound like it to you?I has asked before,could yur husband ever feel the twitching in the tongue?Also you guys asked about weakness,I have a funny sensation up my left leg,kind of like whenyou get your reflexes hit,but mild..Also,no weakness but kind of a stiff/numb type thing in a few of my toes..I have had the foot/leg thng and twitching for about 3 years off and on,now the twitching in the inner soes of my feet are constant.I cant wait till my neuro appt,I cant help but be terrified,but thanks again for all of your imputs/support!

[jimercat]

Mand,

May I ask the name of your Neurologist?

My husband feels the fasciculations, wherever they may be.

You say you felt like your speech was slurred. In my research about bulbar ALS symptoms, most PALS report that they do not think they are slurring their voice. To this day my husband will respond with this when I tell him "I don't understand what you just said:"

"I sound perfectly normal to me!"


Especially in the beginning stages of bulbar symptoms, I would think slurring would be hard to detect. But, Hey like I always say- I'm' no doc.

My husbands bulbar symptoms started with not being able to swallow his saliva and a trip to the ER.

[Mand406]

Thanks so much for your reply!My tongue isnt like the videos I see,it is not constant,its like every few secs./mins or whatever...like a tiny jerk you can see in one spot of my tongue,and my leg,my toes get a little numb on one foot,and my feet twitch a little almost constantly now.and its not weakness I feel in it,its almost like if you get hit in your reflex area,and I notice that behind my ankles look really skinny(may have always been that way)Also,my tongue has scalloped marks,BUT them again I have TMJ and uneven bite..So,although my symptoms are closely related,they seem diff. than most ALS patients I talk to...Im waiting for my referral on a neuro,thats why it will be a week or so....My CMP came back today and they asked that I come in fasting in the morning for another test...IDK what that means!Thanks for your reply and support.Your husband is in better shape than I thought from some of your posts,so thats GREAT,I hope that a cure for this disease will come soon!!

[Mand406]

Also,once his tongue started twitching,did it ever stop or is it here and there?I thought you had said before that he coulnt feel the fasciculations on his tongue??

[olly]

[QUOTE=ZenArcher;39871]

My understanding is that fasciculations are caused by neurons beginning to lose connection to the muscle when they die and as neurons die neighboring neurons will branch out and try to pick up the slack. This continues until at some point there simply aren't enough neurons to cover the muscle at which point it will begin to weaken and atrophy. That would mean that dependent on the rate of neuron death the time between neuron death,


just saw this thread and needed to throw in my two pennys worth lol.
i agree with zenarchers quote above.
from what i have learnt from others and research als/pls progression can not be stereotyped. we are all different and our bodies react differently to desease.
some peoples bodies can repair damage better than others.
take for instance ms , some ms patients brains are more capable at repairing the myelin sheath than others,why?, no one knows.
as for the different sub types of ms i truly believe it may be the same for als/pls given the different types of progression and prominant symptoms during the course.
in pure pls there is said to be no lmn involvement, however a small number of people with pls have slight atrophy or other lmn signs during life but not enough to classify them as having als,maybe umn dominant als. it is said on autopsy there is always lmn involvement. i have had pls/umn symptoms 9yrs now but 18mths ago it was noticed i had hypotonia in my left lower leg. i have had twitchings here for 8yrs,my left foot was quite bad a while ago and my lower leg/foot is weaker. a few months ago after having weakness in my ankle foot i have noticed atrophy round the ankle and top outer foot.
is this lmn involvement as in als? do i now have umn dominant als? can there be another reason for this? i dont know and at this time not too bothered. but i did at one time get really bad twitchings in my shoulders/upper back that is now weak and has muscle loss and i get shoulder contractures.
my neuro has said it is mnd but can not fit me with definate dx into als/pls as i seem to be somewhere in between.
so back to the begining, you can not stereotype,we are all different and our bodies progress,heal,cope differently. the only way to truly know is on autopsy as my neuro said but by then it wont matter.
take good care
caroline:-D