Twitching and the long road to ALS diagnosis.

[Jeliota]

Doctors have a difficult time diagnosing ALS. The average time from the onset of symptoms to diagnosis is 13 months. Some people come in so far advanced that they are diagnosed rather quickly. Others come in with very few symptoms and have to endure the process of ruling everything else out, often times enduring a wrong diagnosis along the way. Something along the order of 55% of all patients diagnosed with ALS go through unnecessary surgeries (spinal, carpel tunnel, etc.) prior to being diagnosed.

This being said, experienced doctors are very very good at diagnosing benign fasciculations. This is demonstrated in several studies, most notably the Mayo Clinic study, where none of the patients diagnosed with BFS were later determined to have ALS. The problem in ALS diagnosis has nothing to do with fasciculations. It is almost always related to trying to determine the exact cause of small peripheral neuropathies, nerve recruitment, etc. It would be completely inaccurate to assume that the patients who present with fasciculations as their only symptom are being diagnosed with benign fasciculation syndrome or being brushed off as okay. I’m not saying that this absolutely never happens, but it is exceedingly rare. Experienced neurologists will tell you that anomalies will almost always show up on the EMG/NCV in these cases. They won't know what's causing the anomalies, but they will know that something is wrong.

I post this here only because there are so many people these days who are obsessed with twitching and ALS. This is because twitching is extraordinarily common and because Google loves an incurable disease. I’m very confident in saying that if you only have twitches and have been given a clean bill of health by a competent neurologist that you should stop worrying about ALS.

[scared of als]

Hey Jeloita this is jenny i tottaly understand what you are saying, and that is def. some good info. but what about some of us here who have only had 3 or 4 emgs within 6 months is that still benin because some pals on here have had normal emgs then come later to find out they have als. i thought bfs come and go. Bfs doesnt dtay countinuous for 4 5 6 months I could be wrong. thanks jenny

[scared of als]

Member
Registered Member

quadbliss's Avatar
Join Date: 2006
Posts: 260
quadbliss is on a distinguished road

Default
In August of 1996 Jen and I were in Mendocino, CA celebrating our anniversary. We both got massages, and after I got mine, I noticed some of the muscles in my back were twitching. I first reported the twitching during a routine physical in January of 1997. My general practitioner referred me to a Neurologist who I saw in May. Because there was no muscle weakness at the time, he could only diagnose me with “benign fasciculations”.

In May of 1998 I noticed that my left hand was getting weak. After a couple months of procrastination, I returned to the Neurologist who told me he was fairly certain I had ALS. They did a couple of nerve function tests, an MRI of my brain, and they scanned for heavy metals. When we came back to hear the results of the tests, the Doctor confirmed the diagnosis, and sent us to an MDA ALS clinic in San Francisco for a second opinion. They agreed.

Mike
__________________
Reality is not solid. The world is unique to each of us in the way we perceive and respond to it.

[Jeliota]

Why have you had so many EMG's in 6 months? Is that at the doctor's request or yours? And what were the results of the EMG's? Is your doctor tracking something or just earning a paycheck by shooting electricity through you and sticking you with pins on a regular basis?

As for the rare person who has a normal EMG and later develops ALS (and I assure you that despite what you read on web forums that this is very rare), there are many possible reasons for this as I have addressed in prior posts. For one thing, BFS is very common and people with BFS get ALS at the same pace as the general population. So a person with BFS today may also have ALS tomorrow. This doesn't mean the two were related. Thanks to the internet, more and more people are becoming aware of their BFS. Used to be only physicians had it because only they would be worried about twitches.

As for, "i thought bfs come and go. Bfs doesnt dtay countinuous for 4 5 6 months I could be wrong."

BFS can come and go or it can stick around indefinitely. I know people who have twitched for more than 10 years. Actually, it would be rare for BFS to just go away, though some people do have periods of calm. Unfortunately, most BFS'ers twitch unrelentingly for years as opposed to months.

[scared of als]

My doc did not want to do it and plus i got a second opinion actually he was really upset with me and i had to beg him to do it. he wont see me he said anymre for emgs he really is a loving doc but he thinks iam wasting my time, he gets mad i go on the internet and bring him stories like this one. why do you not think those emgs are good enough? iam going to als clinic today and iam sure he will tell me something. thanks jenny

[Jeliota]

In the example you show, there is no indication that an EMG/NCV was performed when he was told he had benign fasciculations. It sounds like he just had a routine neurological exam. This is not the proper way to address someone with fasciculations. All patients presenting with fasciculations, especially focalized, should undergo an EMG/NCV. This is generally not how BFS presents. I don't know a single BFS'er who only twitches in one spot.

[scared of als]

But so did other peoples on here and thats what scares a lot of us.

[Jeliota]

We're posting so quickly we're getting confused as to what we are responding to.:-D

I think your first EMG was plenty. All the rest were overkill. You will be told at the ALS clinic today that you are fine.

Your next step should be to address your anxiety so that you can move on with your life. See your physician and get a referral to a psychiatrist or get a prescription for medication. Then search Google for Benign Fasciculation Syndrome and follow the second link. There is a forum there filled with people just like you: twitching, worried and fine.

[Jeliota]

"But so did other peoples on here and thats what scares a lot of us."

I don't believe you'll find that a lot of people on here who are actually diagnosed with ALS had a clean EMG/NCV initially and later had a dirty one and were diagnosed with ALS. It is difficult to figure out on this site who has ALS and who just thinks they have ALS.

I AM ONLY ADDRESSING THOSE WHO HAVE NO SYMPTOMS BUT TWITCHING.

I am not saying that some on this site don't have real reason to be concerned. I have nothing but compassion and empathy for all who are worried about ALS and experiencing terrible symptoms. I can only pray that those with atrophy and weakness along with their twitching are eventually diagnosed with something treatable.

[scared of als]

mine are there all in the same spots mostly in my legs. some neck arms eye nose etc you name it. i dont quite understand i really appreciate all your help i also have weared vision problems to thanks jenny

[Jeliota]

I mean twitching in one spot only. You have generalized twitching.

What type of vision problems do you have? Vision problems are certainly not a symptom of ALS.

[scared of als]

Big Huge Eye Floaters That Go On My Tv Screen And Never Leave My Eye. Its So Weared There Not Your Typical Eyefloaters. And When I Lay Down At Night I Hear Weared Sounds In My Neck That Make A Weared Noise.

[Jeliota]

If the floaters do not move (or float around) as much as usual floaters and are darker, or began as darker than normal floaters, then there is a possibility that you are having hemorrhages from the small blood vessels in your eyes. This is potentially a very very serious problem, and you need to see an eye doctor or a retina specialist immediately.

If the weird sound in your neck is a sort of whooshing sound that corresponds to your pulse, then this could be caused by a number of things but needs to be checked out as soon as possible. Amongst other more benign causes, you could have blocked or torn arteries.

Have you discussed either of these things with your physician? The last thing I want to do is to panic you, but these two symptoms are much more troublesome than twitching and have nothing to do with ALS. Please go see a doctor.

[ltr]

There are quite a lot who have had clean EMG's and later been diagnosed, but most concerning to the posters here is the fact that not only are they twitching, but they have other complaints and really feel quite ill. What there isn't a lot of, is JUST twitchers, most of us have accompanying symptoms. And as far as BFS, fibromyalgia, all those "syndromes", they're just a catch all for "we don't know what is wrong". Twitching is because of irritation of muscles or nerves of some type, just for a reason researchers haven't uncovered yet. Myself, I would much rather have a clear explanation instead of pasting some name on something they don't know about. I just wanted to add, that I was quickly turned off by the website aboutbfs.com when I noted so many grammatical and spelling errors. I have always found reliable websites don't have problems such as those! JMO :)

[Jeliota]

"There are quite a lot who have had clean EMG's and later been diagnosed"

I've already addressed that.

"most concerning to the posters here is the fact that not only are they twitching, but they have other complaints and really feel quite ill"

As I said, I am addressing those with only twitching. I would never make light of anyone's suffering.

"And as far as BFS, fibromyalgia, all those "syndromes", they're just a catch all for "we don't know what is wrong". Twitching is because of irritation of muscles or nerves of some type, just for a reason researchers haven't uncovered yet. Myself, I would much rather have a clear explanation instead of pasting some name on something they don't know about."

And we don't really know what is causing ALS either. In fact, many many diseases and conditions we don't know a cause for. Just because we don't know what causes plaque to form in alzheimers patients doesn't make it an unreal disease. What we do know about BFS and fibromyalgia is that they don't kill anyone. Personally, I would rather have a benign diagnosis and an unclear explanation than a very specific death sentence.

"I just wanted to add, that I was quickly turned off by the website aboutbfs.com when I noted so many grammatical and spelling errors. I have always found reliable websites don't have problems such as those!"

I have no idea who wrote the information pages, and I am unrelated to the site in any way, but the idea that reliable websites "always" are written in perfect English is odd logic.

In any event, I am posting reliable information here in an attempt to reach the small portion of this site's users who are obsessing over ALS when their only symptoms are generalized twitching, and they have had clean neurological work-ups, including EMG's, etc. My thought was to be a source of comfort and support to these people. I am also a volunteer for the ALS Association and have posted on here asking if any ALS sufferers in my area need help of any type. If my posting is unappreciated and a cause of suffering, I will certainly stop. That is not at all what I intended.

[liz]

Jeliota -

I'm sure a moderator will let you know if your posts are out of bounds.

How's the volunteer work going? I find it reassuring that there are folks like you in our communities to help us PALS.

Liz

[Jeliota]

"How's the volunteer work going?"

Honestly, it's a little slow going from here (thus my post here offering help). There's no local chapter. I'm driving about 90 miles to a much smaller metro area to help out with 'the walk to d'feet'.


I shouldn't whine, though. :oops: I just volunteered less than a month ago.

[kathmc]

this may be off wall but have the patients w/ twitching only problems had their potassium/sodium levels checked. I've heard that & also that not drinking enough water ( not soda or other drinks ) can cause twitching, contractions. Kind of like hearing hoof beats & looking for horses, not zebras.

Kath
lexington, ky.

[Al]

I see nothing wrong with your posting Jeliota. Differences of opinion are fine as long as nobody gets abusive and you guys are playing nice. Carry on.
AL.

[Jeliota]

this may be off wall but have the patients w/ twitching only problems had their potassium/sodium levels checked. I've heard that & also that not drinking enough water ( not soda or other drinks ) can cause twitching, contractions. Kind of like hearing hoof beats & looking for horses, not zebras.

Kath
lexington, ky.

That's not off the wall at all. Some twitchers are dehydrated and don’t realize it. For some, making sure they get enough electrolytes and/or taking calcium and magnesium will help. For others like myself, we just keep twitching away no matter what.

And thanks, Al. I always try to play nice. :-D

[guwainengle]

You actually make me feel good about your post- being known as the mad twitcher of PA is no plesant nick name-- but if it is only BFS -- I will be very happy.

Unfortunately I know there is something else wrong and I just hope I am not one of the rare presenting cases.

G

[Jeliota]

G.
Hi G, the mad twitcher, while I agree if twitching is the only symptom it is very reassuring. I am not that lucky however for my twitches come with all the likely suspects, I agree with the fact that some people twitch and it is not als? but what is irritating the nerves and muscles on these individuals?

There is speculation that this is caused by some sort of auto-immune/potassium channel issue, although some people may just be genetically susceptible to nerve hyper-excitability, twitching, cramping, etc. I, for instance, have had cramps every day since childhood. I don’t know anyone who would consider that normal, but the other members of my family get them, too, and they don’t get worse with age. It’s “just one of those things.” I thought cramping all the time was normal until I finally brought it up to my doctor. :-D

[Jeliota]

Agreed I think it definitely is some kind of channel, auto-immune thing, or even some kind of chemical imbalance, wow cramps for all those years how frustrating. Does anything help to calm them down? Good news they have never progressed. The way the metabolism, or endrocine, hormones, also could play a factor maybe..


Well, it's kind of a two-edged sword on controlling them. I've been on klonopin, and that works great so long as I can sleep all the time and don't care if my legs feel like jelly (it also stops my twitching). I seem to get fewer cramps during the day if I drink lots of gatorade. Of course, then I have to get up and run to the bathroom all night. Or maybe that's just an aging man thing, I don't know.:)

Really, I've had them for so long I just don't pay much attention. They go away when the muscle is worked, so it's not like a 24 hour pain sort of thing by any stretch of the imagination. It probably sounds worse than it is.

[Blizna]

Also I would like to join your discussion:

scared of als: The guy you talked about had twitching in back muscle and after two years a weakness in a limb. After two years! It could be possible that the twitch in the back wasnt related, because two years is really long time for ALS. However, if it was, it was localized in one spot! Thats what Jeliota says, ALS doesnt start in the whole body - and as AL wrote somewhere - the whole neuromuscular system doesnt go to the toilet at the same time. Repeat it for yourself - ALS begins in one region, the twitching starts in this region and spread as the disease continues. If your twitching already started in whole body and you have clean EMG - where is the problem? If it was ALS (and had to be pretty developed to the whole body) there would be findings on EMG!
You can try this: In the morning stretch your muscles, especially lift the arms and stretch them as much as you can. In BFS it often triggers fasciculations. Just try to stretch muscles after resting.

Itr: I think that if there are grammar and spelling mistakes on Aboutbfs.com, its even much better. Why? Because its written by normal people who suffer from this. They have personal experiences and thats what you wont find on grammatically perfect scientistic pages. I think more valuable ('for us) are people who have this than scientists who have only their theories.

Jeliota: Yes, the auto-immune issue is possible cause. Probably it could be caused by stress/anxiety, also these arent causes of twitching but lead to the auto-immune disorded that leads to damaging nerves and twitching. Its just theory, but interesting.
PS: Be careful with Klonopin (Rivotril?), its highly addictive and when you stop taking it, you could enter to real hell as I did :(

[pldo]

I too look at old pictures- and look at peoples hands and feet. You know what I have discoverede- no ones is completely normal if you are looking that hard. I have noticed that people twitch way more than I thought . . .

With that being said I too think I have every symptom. I have been having food stick in my throat lately, and I am convinced this is a bad sign.

But I am trying to live by Al's advice. I have a beautiful daughter and she needs me. I am going to be round for as long as I can, and be as happy as I can.

All of us on here have loved ones, friends, and family . . . we are stressing them out . . . we are not feeling ourselves. . . but let us try to live for them as they live/sacrifice or us. And of course we must always keep faith.

[Sandy Loam]

Hi Jeliota,
Thank you for taking the time to guide the point of twitching so well. Your straight talk is refreshing in my opinion.

It certainly seems to me that, the idea of ALS packs such a dramatic / traumatic hammer that if anybody has the slightest sign / signs of symptoms, well you can well imagine the frightening impact on this individual’s life. I recognize that we are all completely in touch with this basic fact, yet somehow it still warrants mentioning.

The manner in which you have presented the issue of twitching gives it such a broad perspective that to attach ALS automatically or even mildly connect the two (2) would certainly seem to be mistake. That said, in Annmarie’s case where she has several other symptoms combined with twitching, well then this will naturally push the probability in the direction of ALS.

The sad reality is that once we arrive on this seemingly hopeless pathway, the idea of having ALS becomes such a terrifing threat that pre-occupation is quite natural. First, the idea of ALS takes a person’s mind hostage. Then come the inevitable lack of a clear Dx that continually suppresses ones deepest hopes and procures the deepest fears.

I am at this moment standing on this scary path and if not for the support and vision provided by these great people on this forum, I would be lost and likely planning my own funeral…………….without just cause.

As for your situation Jenny, I feel for you, I truly do. However, frankly speaking much of the guidance already provided to you by these same wonderful people on this forum is probably as good as it gets. These people cared enough to offer you their guidance, they care enough.

Try not to allow an idea to take you or your mind captive. Use the strength you are demonstrating on this forum to get you to the next step………whatever that should happen to be. Please read the advice provide carefully. I can say sincerely “it worked for me”.

Under these circumstances Jenny, …………..Jeliota is your voice of reason.

Please try to listen to the voice, there is no malice, none.

Stay positive and good luck to all.

Out
Sandy

[ltr]

"There are quite a lot who have had clean EMG's and later been diagnosed"

I've already addressed that.

"most concerning to the posters here is the fact that not only are they twitching, but they have other complaints and really feel quite ill"

As I said, I am addressing those with only twitching. I would never make light of anyone's suffering.

"And as far as BFS, fibromyalgia, all those "syndromes", they're just a catch all for "we don't know what is wrong". Twitching is because of irritation of muscles or nerves of some type, just for a reason researchers haven't uncovered yet. Myself, I would much rather have a clear explanation instead of pasting some name on something they don't know about."

And we don't really know what is causing ALS either. In fact, many many diseases and conditions we don't know a cause for. Just because we don't know what causes plaque to form in alzheimers patients doesn't make it an unreal disease. What we do know about BFS and fibromyalgia is that they don't kill anyone. Personally, I would rather have a benign diagnosis and an unclear explanation than a very specific death sentence.

"I just wanted to add, that I was quickly turned off by the website aboutbfs.com when I noted so many grammatical and spelling errors. I have always found reliable websites don't have problems such as those!"

I have no idea who wrote the information pages, and I am unrelated to the site in any way, but the idea that reliable websites "always" are written in perfect English is odd logic.

In any event, I am posting reliable information here in an attempt to reach the small portion of this site's users who are obsessing over ALS when their only symptoms are generalized twitching, and they have had clean neurological work-ups, including EMG's, etc. My thought was to be a source of comfort and support to these people. I am also a volunteer for the ALS Association and have posted on here asking if any ALS sufferers in my area need help of any type. If my posting is unappreciated and a cause of suffering, I will certainly stop. That is not at all what I intended.

WOW. I certainly didn't expect something like this for a simple paragraph of how I felt about twitching!! I really don't think it is necessary, so I won't go back and address everything, but the odd logic about bad grammar on websites I have to address. There isn't a professor at any college or teacher at any school that would appreciate a person referencing a website that had errors and probably would note that any work done from the website as unreliable. I was just going by what I have been taught and really thought that was just common knowledge.

The only other thing I would like to say about this is that I too am a volunteer for the ALS Association and never mentioned it on this website to anyone. Does that help you to accept what I am saying with a little more understanding?? I guess from reading your earlier posts when you were scared that I can understand your defensiveness to my post, but really it was just a very short opinion of how I feel about twitching, nothing more! Sorry it upset you!:)

[scared of als]

Thanks for telling me about my vision ive been to a top nuero-opthomologest and he found them he said they are benin. Nothing wrong with vision just debrie in eye, i also see a cardio and i had a eco they took pics of heart and noithing wrong i just have pvcs. very annoing came on from baby. dont ever worry you would panic me your only triyng to help and i appreciate it. I WILL LET EVERYONE NO HOW MY DOC AT THE ALS CLINIC WENT TODAY WHEN IM DONE TAKING A BATH AND EATING ICECREAM I HAVE A LOT TO SHARE. Thanks everyone

[Jeliota]

"...but the odd logic about bad grammar on websites I have to address. There isn't a professor at any college or teacher at any school that would appreciate a person referencing a website that had errors and probably would note that any work done from the website as unreliable."

There is a significant difference between errors in content and errors in grammar. I frequently find tense and punctuation errors in peer reviewed analytical chemistry papers, yet I know of no professors who consider this a sign that the science is wrong. Perhaps our English professors would. I'll have to ask them. :-D

The only other thing I would like to say about this is that I too am a volunteer for the ALS Association and never mentioned it on this website to anyone. Does that help you to accept what I am saying with a little more understanding?? I guess from reading your earlier posts when you were scared that I can understand your defensiveness to my post, but really it was just a very short opinion of how I feel about twitching, nothing more! Sorry it upset you!

Certainly I see what you are saying.

1) First of all, I am not a biologist or medical doctor. My knowledge of ALS and twitching comes from intensive self-study and experience, not formal education. Noticing the context in which I brought my volunteer work up, you will see that I only mentioned this in order to show that I have no malice towards PALS or people who are going through the diagnostic process; that I am not posting this with an agenda, but to help people who really have no reason to be fretting over this terrible disease.

2) I am not defensive about your post, nor am I upset. I am defensive of MY OWN post because I know it to be true and because I want to help people who are now in the position I once was. I was horrified that I had ALS--absolutely horrified. And when my first (yes, my first, there were others) neurologist told me that I was fine, I didn't believe him. I had to go through a process of painful self-education to get to the point I am at today. I don't have ALS and am relieved beyond belief.

The only reason I have been visiting the "Do I have ALS forum" is because I thought I might help others who are in the same position I was in several months ago. I have learned a bit, both from a variety of neurologists and from people who have suffered from BFS for many years, and I thought perhaps that a couple of the terrified and confused on this site could use a little help.

Nothing more. Nothing less.

I apologize if anything I posted came across as rude. I was simply trying to address various points in your post. Perhaps I am too aggressively anal retentive. Probably that's the nature of my profession. :oops:

[Jeliota]

"like Leslie said many of the reasons we twitch need to be looked into for not so benign causes, only one of which benign"

Absolutely. You twitch; you go to the doctor--period. There are many causes for twitching that can be treated, but which can get really nasty if ignored.

Yes, you can't really have BFS unless you've been tested for all the bad causes of twitches. You can't just get an EMG and have someone thwack you on the knees. You need a lot of blood work.

[sebastian]

I have a question.. I have been twitching for the passed six months- no real muscle loss or strenghts. Also lately I have been walking akward on and off - i read about ALS and ackward walking or running. My ackward walking comes and goes. It usually lasts for 10-15 seconds and goes away. Start in few minutes or the next day for few feconds at a time. Is this normal for ALS?

[Jeliota]

I really don't know. Seems like from what I hear, usually once something like a gait change happens it happens for good, as opposed to coming and going, but I wouldn't take it to the bank. Have you seen your neurologist yet?

[CindyM]

I read it could happen at first when you are overtired or the muscles are beginning to go. Not to scare you, Sebastian. Another point is htat it takes some folks a really long tiem to get a definative DX. Brace yourself. I spend lots of tiem learnign how to relax and how to not "cross bridges" before I get to them. CIndy