Confused by Twitching and ALS

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EnlgishBirder

Well-known member
There's so much conflicting information on twitching. I'm absolutely convinced that I'm just as likely to have ALS as BFS.Can someone please help. I've read that twitching does not always come after weakness and there are whole threads on other forums discussing how twitching is the norm before weakness. If this is the case I'm playing a huge waiting game. I've also read that lots of people had good EMGs with no weakness, only twitching and did have it. I'm terrified.. My neuro did not think it was necessary to do an EMG so I've no idea if its clean or not.. I'm getting bodywide twitching (yes more in legs) but again I've read research papers saying most benign twitching in BFS is in the legs. I get twitches all over.I can feel twitches but I can't see them, I can see and feel twitches, and even more worrying i can see fine twitches in my thumb but not feel them I've read these are hallmark ALS.I'm so anxious - can anyone set the record straight here? Thanks x
 
look, simple bit of info:in the absence of clincial changes (normal exam) your chances to get ALS are about 1 to 100 000 (roughtly for the order of magnitude), so about 1 x 10E-5your chances to get BFS are, by certain researches, really close to 25 %. OK let say 10 %. it is 1 x 10 E-2.So form the point of prevalence in the population you have 1000 more chances to have BFS that ALS. not 'the same'. with your set of symptomes possibility that this is BFS is close to 100%. And your chances to get ALS are still the same as population prevalence, 1 x 10E-5 by order of magnitude.
 
I've been confused by this as well, since all of this started. There are certainly accounts in forums and medical journals of a few folks with twitching and clean EMGs that went on to develop ALS, but I have always just assumed they had BFS and unfortunately developed ALS.
 
If you go on the als forum you end up thinking you have it, if you go on the anxiety sites no one mentions als or bfs and if you come here its not als. I'm so confused and depressed. I have cramps, twitching all over especially legs but ribs, back, face, shoulders. I have a blocked nose, funny sounding voice that to me is nasally, excess saliva and throat clearing. I have had a normal clinical exam but no EMG and I'm trying to tell myself this is all anxiety. :crying:
 
That is why you should NEVER go to any other site for 'research' on BFS. I have not for a long long time. Unforunately, those stories are pasted to the back of my head and I've been trying to make them as fuzzy as possible.
 
Yeah the first step to any of this is really "stop googling your symptoms" and "stop reading medical forums." You are bound to find something scary no matter where you look because that's the way the human brain works. We always remember the scarier stuff because our brains are designed to help us survive. Even if you read 1000 happy stories and 1 scary one, the scary one will stand out even though that was the exception. It's the same reason people think flying is so much unsafer than it really is. Because you will fixate on the one time a plane crashed and not the hundreds of thousands of times that it didn't. Like they say in the news, if it bleeds, it leads. If you want to go out looking for scary things, you will find them.Again, step one. Stop googling your symptoms. Stop obsessively researching the internet. There is no way you can make any sort of recovery from anxiety of BFS or overload or adrenal fatigue until you do that. The next step is really up to you.
 
I know, it's just like my hands keep picking up my phone and I'm addicted. Today I actually tried to find a black light / uv app on my phone so I could see if I'm invisible twitching because when I was in a bathroom the lights were kind of spotlight like and I saw but not felt fine twitching in my thumb. I actually ended up doenloading a magnifiet and a torch app. WTF. I'm now going round my whole body looking at it with a torch. If it wasn't so sad it would be funny. I feel like crying.
 
You will be laughing about it in five years, because we were all like that at first. Everyone here knows exactly what you are going through. Which is why you should listen to us. We have been there. :D) The pattern of BFS for people is very predictable, if nothing else. In a year you will suddenly think you have bulbar symptoms. I mean, read my FAQ below that I put in my signature. That pretty much sums it up. No one on this board has anything significantly wrong with them. Your enemy will never be the twitches themselves, but rather your interpretation of the twitches. Just keep that in mind any time you start flying off the anxiety deep end. Ask yourself how it is possibly helping to choose to be freaked out all the time. Because remember, your reaction to the twitches is always a choice.
 
Thanks for the sanity check. I've been through the whole works since March. My timeline isFeb: cold and sore thumb joint, read feature about MND. Mentions sore joints and twitching. I remember thinking at least I don't twitch. 2 days later I'm twitching.March: twitching continues but I self test my arms and hands - fine. April/ may twitching gets worse.June/ July twitching abates i learn to cope.August back with a vengeance and I have clicky knee and feels weak.Go to see neuro who says clinical normal so no EMG.Sept - still twitching. Settled in calves and legs but also bodywide. Now think I have bulbar issues - blocked nose and nasal voice.
 
I've been freaking out over the past few months because of all the crazy symptoms I've had. I know exactly what you're going through, and everything Johnny says is true. We all go through this obsessive research phase and discover that it's harmful. The one thing that helped me over the past week was doing yoga. Now I have real pains in my body that I can focus on. I know that sounds weird, but it's really helped me. I'm so tired of stuff that crops up without any explanation -- at least now when my thigh aches I can say, "Oh, yeah, that's because I twisted myself into a pretzel last week." You really, truly are fine. I've been in the exact same spot -- even had weird bulbar sensations last week after reading something on this forum ( didn't know what bulbar was before). You'll get through it. But you have to make the decision to change your mind-set. God bless!
 
I think this is one of the problems with this board, people are so keen not to cause any unnecessary distress (with very good reason) then they say something never happens when the reality is that it can happen, but so rarely that it makes no sense to worry about it.You then read about cases that contradict what you have read here and start to doubt all of it, even coming to ridiculous conclusions ( :) ) that ALS is just as likely as BFS. So yes, twitches can be the initial symptom of ALS etc but irrespective of all of this the probability that you have ALS is still so low that it is hardly worth mentioning (You may die in a horrific car crash on the way to the neurology appointment but you don't lie awake at night worrying about it because the probability is so low).So if I haven't offended every one by suggesting that accuracy here is sometimes the victim of a fear of causing more anxiety, then I am going to risk offending you by pointing out that your twitches didn't even start until you read that they were a symptom of ALS. That, and everything about your timeline, just screams BFS which is why the real experts aren't concerned at all (therefore not even an EMG) and that is all you need to concentrate on.GlowGreen
 
Well, my dear, many of us think (and no one consciously I believe) that visit to a doctor who says "you do not have ALS' would immediately cease twitches.Which is wrong.Whatever is the reason of our twitches, it definitely does not settle exclusively in our fears. I can name probably two-three physiological reasons other than neural degeneration, and each of them is rather irreversible (becasue,for example, if it is am autoimmune attack, you can not reverese it, just hope that your body would quench it or take antihystamines and antibody-based drugs for the rest of life).You listed your timeline, and believe me, should it be ALS, there would be already a line stating that you are impaired in one of your limbs. And sorry for being cruel, a line staing that blocked nose makes you think that you have bulbar symptomes made me laugh (it was a sad lagh of course). Therer is no medication in regards of BFS. Nothing that doctor can give you and your twitches would be gone. Experience of this community is that people continue to twitch, have pains, cramps etc. but never fall disabled as it should happen if that would be a major MND. This experience also states that treating stress and anxiety usually helps a lot to bring twitches andother symptomes down to the background level. So your plan should rather be taking care about your actual disease (severe stress reaction), and a cure is known - it is psychotherapy, meditation, some medicine taken under regular control of trusted psychiatrist, phototherapy to compensate lack of cunlight and time.
 
EnlgishBirder,I am newer to twitching than you (only 6 weeks now), but I found it interesting that you first had another "symptom" of ALS that led you to discover fasciculation and then developed twitching 2 days later. My "swallowing" difficulties led me to ALS. Just like you, I also watched for fasciculations and thought, "thank goodness I don't have that symptom". Sure enough, my twitches showed up 2 days later. I also got a kick out of your app download. I have put myself through so many crazy tests lately it is absurd (staring at my tongue in my car visor mirror to watch for fasciculations, tenting cheeks with my tongue, chugging huge glasses of water to make sure swallowing is okay, measuring how far I can jump on each leg, etc., etc., etc.). I also haven't had an EMG and the Neuro told me I didn't need one. I also am still not convinced. But, hearing stories like yours and countless others is helping. Hang it there.
 
Thanks Steph. I sooo know the car mirror - and the useful torch app that i also have on my phone. I must look such a freak as I'm waiting in the car to pick up my kids from school. Or the blowing really hard and "popping my cheeks" to see how much air I can hold as I'm driving. As I've said before if it wasn't so sad I'd laugh. My latest one is watching for fine twitches in my arms and getting my poor long suffering husband to check my shoulder blades for worms. It's horrible being like this. I've just had laparoscopic surgey (2 days ago) and twitching neither better but not any worse which was what really worried me. My calves and knees are still going mad at the moment - they constantly feel "loaded" as a coiled spring. Does anyone else get this feeling? I'm also feeling all my food as it goes down and I have to burp (probably too much info) but I keep having to tell myself its indigestion or anxiety.:(
 
Thanks seepi27. Yes I'm a Brit and currently feel like I'm the only one suffering from this awful twitching so i might PM you if that's ok! I think in the UK doctors are more reluctant to categorise what I'm experiencing and my GP who is lovely has never once in this whole 9 months suggested a referral to a neurologist. I ended up looking for one myself and paying to go private. He's an MND expert (of course!) and I haven't told my GP that I've been as I'm scared that if I did and i ever needed to go back because things change they would not take me seriously. How mad is that!
 
Had my brain MRI on Monday and my neuro did the NCS/EMG yesterday. She said my EMG was so normal! In fact, she said that she's not going to write "normal" on my chart, she's going to write "ridiculously normal!". :D) I love my neuro! She's young, very responsive, and has had BFS for the past 7 years. In fact, as she sat on her stool, she said that she was popping all over her legs. Then, she stood up and said -- but, see, I'm standing! This is what BFS is like.So, I feel comfortable asking her a lot of questions and she spends time answering them and drawing pictures, showing me the scans of my brain, etc. She told me that she has diagnosed 2 patients in the past two weeks with ALS. She said they had fascics but they could not feel them. She added that this is typical of ALS --- you don't feel your twitches. And while it's possible to have a "normal" EMG with ALS, she said that you usually see "something" on it that just doesn't sit right with you.Thought I'd pass this along to hopefully provide some peace of mind to those twitching and still worried.
 
^^^^^laughing so hard at one leg hopping bc I am doing this all the time. And one leg step ups. And lunges. I'mSelf testing like a beast. Hell I'm afraid to get out if bed every morning bc I'm afraid my foot won't work. And I'm 2 weeks in. We are a sad lot lol. But at least we arent alone :)
 
My self tests have included:- Hopping upstairs on one leg.- walking backwards downstairs on tiptoe- getting up from sitting on low ish chair on one leg (hard and right leg defo stronger than left which has freaked me out) repeat each leg 10 x- walking on heels and tiptoes.- balancing on one leg and lifting up onto tiptoe without holding on 10 x each leg - doing the crab (what you used to do as a kid where you lift yourself upside down in legs and arms in an arch)- using a bulldog clip to individually test each fingers pinch test (including little fingers)- gripping heavy encyclopaedias- turning taps on and off- doing buttons with one hand - blowing cheeks out and squeezing to see if air escapes- wiggling tongue side to side very fast and also saying tongue twisters.- doing the pronator drift test- standing on one leg and timing a minute each leg- the gym Do I sound normal? :eek:
 
^^^I do all of these except the tongue twisters and cheeks. Maybe I should step up my game lol? If nothing else we will be the fittest bunch around! Now all of you stop making me laugh so I can go back to being miserable and morbid.
 
Used to do all of them daily for 2 years ....oh and my children still walk around eveywhere on their heels coping "mummys funny walking" Here are some other crazies I used to do. I have a water gun of my sons and I had to pull the tigger 60 times each finger.I had to grip the top of one of my daughter's wellie boot with my toes, and lift it up and down with my foot.I played daily my other daughter's cake game on DS, in it you have to stack complex layes of cakes of various colours ( UMN test)I hop up 2 sets of spiral stairs and back down again.I filled a glass with water and made myself drink it down though a tiny straw without stopping, if I spluttered I failed.I have laid off now but as I said in another post i still wobble and wonder if I can ever get as strong as some on this forum have become.They are the ones that give me hope.Helen
 

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