how are ALS and BFS twitches different?

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how are ALS and BFS twitches different?

Postby guest on September 12th, 2002, 8:39 pm

Arron,
You wrote that ALS twitches are different from BFS twitches. How?
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Postby Arron on September 12th, 2002, 11:43 pm

They are totally different once you know what to look for and how ALS works. OK, here's the deal, (as far as I know but remember, I am NOT a doctor, this is just what I have learned through my studying and believe me, I've done LOTS of it).

ALS "usually" starts-off in something like a hand, a foot, the throat or somewhere like an outer extremity. ALS is caused by disconnecting nerve endings between the muscle itself and the brain. Once those neuro wiring disconnect, that muscle can no longer be used and in response to it starting to die, it twitches. ALS twitches are "usually" very fine and "usually" can't even be felt, (being that the nerve sending information to and from the brain has since been disconnected) and sometimes the twitches are so fine, they can't even be seen. The way they are seen is by a special light at the neuro's office. being that they have a special light just for seeing these micro fasciculations should tell you that ALS twitches are usually pretty small, right?

OK, BFS twitches are usually heavier in tembre and jump around from place to place. One minute your left index finger twitches, the next your butt cheek is twitching, later-on your thigh muscle bumps and thumps for a while and after that, your eye lid will twitch for a few hours. ALS does NOT jump around like that. It starts in one place and migrates as the muscle dies. BFS twitches can be very fine. So fine in fact, they cause "buzzing" or vibrating sensations. Other twitches might be so powerful that they move a whole large muscle group, such as a quadrecept or a bicep. BFS twitches will come and go at randome. ALS twitches are non stop and migrate WITH the weakening limb. As the weakness migratesd up the arm or leg, the twitches will follow. This is not the case with BFS at all. BFS twitches usually hit and run, meaning they will bump for a few seconds in one place and then move to someplace entirely different. BFS twitches can hit once in one spot and never hit that spoy again for a long time. BFS twitches can also hit one spot and rumble, bump and thump for hours, days , weeks and even months on end. It just depends on how irritated that nerve is at the time. Some BFS twitches are really hard and fast and can move clothing. Other BFS twitches move really slowly and can actually flex and hold the muscle for a moment before releasing it again. ALS twitches will never do that. Not from what I have seen and read anyway and trust me, I have studied this stuff a LOT! So as you can see, there is a huge difference between a benign twitch and something associated with something nasty and that is one of the many reasons why a good neuro can sometimes tell right away whether you have something bad or not the minute you walk through their door. Hope that helped ease some minds...
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Twitching and afraid..

Postby traci on September 26th, 2002, 2:08 pm

I am thankful to have found this site. If anyone actually knew how my twitches have affected me, I would be certifiable. I started twitching 2 months ago. Being a nurse, I knew that the occassional twitch was normal but mine were not (all over, frequent). I researched muscle twitching and guess what pops up....ALS. I flip out. I just know that the fatigue and twitching is the beginning of the end. Didn't want to visit a doctor for fear of hearing the worst. I have spent the last year in a doctors office, and I am tired of it (I had a very high risk pregnancy and near the end was going 3 times a week to different doctors). I had a cancer scare during my pregnancy, started having PVC's (heart rythym irregularity which I have had since my teens that comes and goes). Not to mention the constant fear of dying in child birth and leaving my 7 yr old momless. My husband got transferred my last month of pregnancy and we were moving, having a baby and starting new job all in one month. Got another cancer scare, no recovery time from having my baby, my baby developed colic and reflux disease I was even afraid of losing him at one point. My daughter developed suspicious moles on her scalp and so yet another cancer scare( she's fine :D ). My ex is now scaring me with threats. So to say the least, I am WAY stressed. I have finally decided to get some blood work this week and see my doctor. I have suffered major anxiety since my childhood and depression, that I manage with positive and relaxing thoughts. Only now, it isn't working so well. I cry so much during the day, I am getting to where I can't hide my anxiety from my family like I could before. I hate being alone, this fear of ALS is ruling me. I actually asked my husband to come home early yesterday, because I couldn't take it and I had myself convinced I was dying. I am (despite what it sounds like in my posting) a pretty level person. I am terrified of this . My children need me. And the thought of not being there for them is killing me, not to mention the horrific course of ALS. Since finding this site, I feel somewhat better. My twitching had subsided signigicantly for a while and just recently became more noticeable, hence my fresh round of freaking out. Yesterday I had very noticeable twitching in my left forefinger. It was all day, none today. I am not getting weak that I can tell (done some self neuro tests). I hang on to that for now. It is so good to know that others are experiencing this too. It helps not to feel so isolated in your fear. I also noticed after my husband came home and I relaxed and napped for a short while my finger quieted down.
One question for any females out there.... have you noticed an increase in twitching with PMS or the onset of your menses each month?
Thank you so much for reading.
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Postby Debbs on September 27th, 2002, 1:22 am

Hi ya Traci,

I understand where your coming from, my kids are my top priority too, I love em to bits and the thought of not being round for them was for me my greatest fear, but I have had tests that reveal nothing significant so I my mind is at ease now, perhaps you should have some tests done for your own peace of mind if you havent already, like and MRI or an EMG ??You sound like a great mum who has a lot of stresses and pressures in your life right now, its not easy working and bringing up the kids little own having the fear of cancer thrust upon you, thats trauma big time and its no wonder your sensitive and your body is reacting the way it is...perhaps your system is on overload? When was the last time you had some time just for yourself and relaxed? Pms time for me is always a nightmare but specially for my hubby ..lol.. (poor guy) I have not noticed an increase in twitching tho, but most definately an increase in fatigue. Hope Ive helped in some way.

Take care
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Postby SusanSid on September 27th, 2002, 1:52 am

Hi Traci,
Wow, I'm sure a lot of us can identify with your concerns. I am also a nurse and I think that's not a good thing in a situation like this...you know too much and worry about the rare things such as ALS. The worry about leaving your kids is normal, for all of us who have children, we can understand, really!
Don't go on the web and look up ALS or anything like that. Stick to this website, get in to see a doctor to help you with your fears. Get something to help you relax, such as Xanax or the like would be a good thing until you can get this under control. Ask for support, even counseling if you can, but don't isolate yourself and read a bunch of medical stuff that is most likely incorrect when it comes to fasciculations. I encourage you to get support, there is a good likelyhood that some post partum depression is going along with your twitches. It's common and there is help out there. TAKE CARE OF YOURSELF and keep in touch.
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Differences in twitching

Postby Jeff on September 27th, 2002, 2:38 pm

I posted this on the original aboutbfs board but here goes again... word for word email from my neurologist:

"Typical benign (i.e. not ALS) fasciculations are big movements, often VERY symptomatic (they drive the sufferer nuts) and even uncomfortable. They can be anywhere and often seem to jump around - hand for a few days, calves for a few days and so on, but have a predilection for the calf muscles. Benign fasciculations are often quite prominent and the same movement again and again in the same muscle. ALS fasciculations don't seem to occur in the bursts of activity that benign ones do.

I have been working in this specialty area for over 10 years. I have seen
far more people with benign symptomatic fasciculations than people with fasciculations that turned out to have ALS. In fact I can think of only one person who saw me with fasciculations alone that turned out to have ALS."
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Postby Arron on September 28th, 2002, 12:12 pm

Thanks Jeff, that just supports what I have been trying to say and your neuro did it VERY well. I hope that helps ease people's minds even more than just "my" words. Great post and thanks for posting it again for us!
:D
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how young can people devolop ALS?

Postby aaronstaley on September 28th, 2002, 5:46 pm

Hi,

I am so glad that I found this site. I am 22 years old and I developed twitching, literally, overnight in my left leg about 1 month ago. It then spread to my entire body within 2 days. Being a hypochondriac, this is probably the worst thing that could have ever happened to me because as most of you know, when you search on the internet for fasciculations, nothing nice comes up.

I was so depressed about it that I could not function. My fiancee got so fed up with it she somehow got me an appt. with a neuro immediatly. He gave me an an exam and EMG and said that I had no chance of any neurological disease and the my fasciculations were benign.

As I search the internet for answers (hours on end).. I cannot find a discreet distribution chart for the ages that people develop ALS because I figured it would help me cope with my anxiety using probabilities.

My question is, at 22, a negative EMG, and having similar twitching symptoms as the rest of you... am I in the clear?

Thanks for you comments and thank you for this site. I have never been this depressed before in my entire life and this site has given me hope.

Aaron.
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Postby Guest on September 28th, 2002, 8:22 pm

To ArronStaley...You are most definitely in the clear. ALS is VERY rare in people under 40. Almost unheard of in someone your age. With a clean EMG, you don't have ALS. The twitching caused by ALS is due to the denervation of muscle tissue. An EMG would easily reveal this. To paraphase a Neurologist from the Cleveland Clinic, a clean EMG with twitching muscles is never ALS. You're Young, enjoy your life.
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Postby graberc on September 29th, 2002, 8:02 pm

I started twitching in my left thumb. Now I'm wondering it was unrelated or some kind of precusor to my current problem.

I'm in the exact boat though. 27, enganged, and quite sure for a while that I'm going to die. Now I don't know. . but every feeling, every twitch.

And I shoulnt read it. . .but HarryAZ posts freak me out. . .(http://neuro-mancer.mgh.harvard.edu/ubb ... 02335.html) (please note he didn't see a doctor until weakness was VERY prounced and a decent Neuro probally could of picked up the weakness or whatever much earlier).

I mean he didn't notice ANY weakness for almost a year (he was 50+ though, and, stated that when he did show signs of weakness he dismissed them as old age). Still I take some comfort in the fact that my Reflexes are normal and that my EMG of the left arm was normal. Still now I'm scared that maybe it was my left leg where it's starting. . .as now it's causing the most problems.

*beep* I'm freaked.

So once again. .i'm freaked
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Postby Guest on September 30th, 2002, 8:32 am

I read HarryAZ's posts, and they are scary. I've been twitching for about a year now and have had 2 clean emgs and numerous visits with several Neurologists, and his posts still made me a little uneasy. There are a few things to remember though. The first is that he had severe cramping along with his fascics. Also, you have to keep in mind that you are reading messages posted by complete strangers. You shouldn't base your fear on one person's unusual experience with a very rare disease that almost never strikes below 40. The odds of you having ALS are astronomical. Go to a Neurologist, get an EMG(which I'm sure will be clean) and then get on with your life.
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Postby Paranoid on September 30th, 2002, 9:31 am

That was the scary part... The severe cramping. My symptoms keep changing and now include cramping ( not necessarily severe, but uncomfortable) in my right calf muscle amd increased fascis in this location. The post from HARRYAZ was about the worst thing I could have read. I tried successfully to keep away from scary sites but this has come up on two different BFS sites.
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Postby graberc on September 30th, 2002, 11:11 am

I think there are some interesting points. . .

1 cramping. 80-90% of als patients get cramping. . and from harry's desc it's really weird cramping. I mean cramping in both legs at the same time?

2 waiting. harry didn't see a doctor for a year. . .waiting until the weakness was very severe. All of us saw one immediatly

Yeah I know though, I'm still freaking out and all the assurances of "twitching without weakness" doesn't make me feel that much better.
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Whoa!

Postby Jeff on September 30th, 2002, 11:16 am

Chill out here folks! As is often the case, there is a tendency to skim, get the heart beat racing and freak out. Carefully read what is said, here are some exerpts:

"I recall when I would move my arm into a twisting motion to reach into my shirt pocket, my whole hand and fingers would curl up into a deformed shape. I believe this is what is called clonus. This still happens to me."

Clonus is a key sign of MND and he had it relatively early on and often by the sounds of things. This next one is very important and has been echoed many times by neurologists:

"In the beginning my fasciculations were not as dramatic as the cramps. Whereas the cramps have diminished somewhat as my ALS has progressed, the fascics have intensified. In the beginning they were hardly noticeable and I had to search hard in my memory as to when they started....
not so with the cramps."

Fasics get worse with ALS, they increase in frequency and intensity. Can any of us say they were "hardly noticeable" in the beginning? I know mine certainly weren't!

"I have found that other patients experience a different pattern of symptoms, so I do not speak for others."

He is a rare presentation of a rare disease. We need to deal with the experts and look at the vast majority rather than the odd exception. You can find an exeption to every rule. I'll do another post with some factual information I have uncovered over the past 6 months.
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Postby graberc on September 30th, 2002, 11:23 am

also that site has a great Neuro Forum as well. . NeuroMuscular. Post on there and LOTS will respond.

espeically if you say newbie twitcher
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