View Full Version : The ever elusive twitch- I'm going crazy
Mommyof2boys
02-02-17, 16:24
In October I began feeling twitches in both legs, all over them like popcorn kernels. Not terribly strong. But terrifying. It has been nearly 4 months and it seems like it's exactly the same as the first day I noticed them. Except for the last week or so it seems to be more in my left arch of my foot and calf than anywhere else. Rarely do I have a twitch outside of my legs.
I have also began to have a jolt-twitch in my stomach/gut area when trying to fall asleep.
I have scalloped tongue.
For the past few days my feet have had a rolling spasm so hard it wakes me up from my sleep.
It is hard for me to lift my big toes alone while standing.
I could go on and on.
Oh and my grandmother had ALS.
I have an appointment on Monday that I made nearly two weeks ago. The waiting is killing me. I am crying and not sleeping and can't really eat.
I feel like I am making a coin toss. Either this is als or bfs and the odds for both are slim.
I am completely healthy in every way. Except this twitch.
I have had severe ha about other ailments, including ms, heart issues, tetanus and stds. But none with symptoms so inexplicable and concrete as this twitch that hasn't let up in months.
I have researched far too much now and I have already basically diagnosed myself.
When I see others who complain about twitching and their fear of als, they state it's an all over twitch or they've only had it for a few days/weeks. When I read the stories about als patients who exhibited twitching first, it was in one are more than others and could be up to 18 months before a definitive diagnosis of als.
So I am hanging in the air and terrified beyond measure, exhausted all my family members and friends who have had to hear me complain over the years about other health scares, and I feel alone and isolated and more devastated than I have ever felt before in my life.
Please someone offer me some sort of comfort or something. I literally have no other option at this point but to wait. And I am no longer a functioning human being.
Sounds like you're having a difficult time, lady. With this particular fear, it doesn't matter how much rationality you throw at it, it doesn't seem to budge. So I'm not going to waste time trying to reassure you as you already know this is a rare disease, and the likelihood of you having it are slim even though your grandmother had it (sorry to hear about that, by the way).
Now I've been twitching for 17 months. I've had every twitch in the book. Small twitches, big twitches, violent twitches. I've had perceived weakness, fatigue, pain and aches that migrate around my body, one or two stray charlie horses, numbness, tingling, etc. I'm not dead or immobile yet, and nothing has appeared CLINICALLY that would register as an illness.
This is a hole you don't want to stay in for long, it's every hypochondriacs Achilles heel it seems. You have to understand there is a massive difference between something clinically alarming and something that's alarming to us. Of course every weird sensation is going to scare us, but that doesn't mean a doc is going to be concerned.
The reason people wait 18 months sometimes to get diagnosed is because 3 things must be present: 1) progressive clinical weakness 2) two dirty emgs to confirm diagnosis 3) muscle wasting and atrophy. Once those three signs are present, a diagnosis can take place. A neurologist isn't going to throw that diagnosis out there even if they make the assumption at the first appointment with the patient. They want to rule everything out first before ever making a terminal diagnosis to any patient, period.
You seem to fit the perfect picture for a hypochondriac. I honestly think you're absolutely fine, and when a doctor tells you you're fine, my advice would be to listen to them and drop the matter immediately or you will continue to spiral and it'll be a ridiculously difficult feat to abandon the obsession.
Mommyof2boys
02-02-17, 17:19
Thank you so much.
I really and truly appreciate it.
I hate to admit it but I know that I can't really be reassured maybe not even by a doctor. My family and friends have tried desperately to get me to calm down about it but I can't.
I do have better days, laugh a little more, feel less twitches. But then I have days like today where I plant my face into the als forums and google and spend the day immobile, crying, and sick with fear.
I sincerely hope everyone's predictions are right and that I am completely okay. And I hope that I am not wasting precious time worrying when I have children to love and life to live...
Are you doing anything to manage your anxiety? There's no shame in therapy or medication. I was never particularly fond of therapists, but I've had luck with medication. You should consider anxiety treatment options when your gp tells you that you're just fine. I couldn't break my obsessive cycles without medication, especially when health anxiety began to come around with my already existing OCD.
Word of advice from someone who has been in your shoes: DO NOT, under ANY circumstances besides being diagnosed or having a physician tell you that they're investigating the possibility, go on the als forums. And under no circumstance should you get a profile and post there, it's extremely disrespectful to those who are suffering. I assume you can empathize as your grandmother went through it.
Most people around you will realize something is wrong before you do, trust me when I say if they've noticed any changes in you, or felt your fear was grounded on some kind of reality, they would be concerned too.
For the sake of your mental health, get checked out. But after your doc says you're alright, please speak to them about your anxiety issues and possibly getting you on some temporary medication for some relief of this obsession so you can get back to your life and some form of recovery.
Mommyof2boys
02-02-17, 18:12
I absolutely will be getting some form of help for anxiety, whether it's therapy or medication, and whether the doctor says I am fine or not. I have never addressed it because I've always just dealt with it, rode the waves and dealt with the fallout. I am living in a new town, just moved out of my parents who helped me raise my 3 year old and 5 year old, going back to school for the first time in 3 years, and am getting married this year. Everything in my life is currently on the back burner, I'm not turning in school work, haven't tried to work on my wedding, and rarely pay attention to anyone but myself. I am hurting the ones around me and possibly worrying my mom by bringing up the disease that took her mom from her. She doesn't believe for a second that I have it but I feel awful mentioning it to her and making her re live it. But I also ache to confide in her about this...
I shouldn't have posted on the als forum but in was not at a rational place and I don't plan on posting there again unless I have a reason..
You've got a lot on your plate. It's completely natural to fall into bad anxiety cycles when a lot of change is happening that you may not mentally be prepared for. I had an anxious relapse a few weeks ago and had to get back on my medication because I moved out of my parents house and into a condo with my fiancée, dropped out of my major in college (radiology, I was on my final year), huge workplace change (from a hospital to a bank, and I can't stand customer service), and my mom was having some health issues that ended up fine...but still, all the stress and change messed me up. It typically does to us anxious peeps. You're not alone in that fact but understand that everyone's body has a tolerance for anxiety. Keep it under pressure for too long without some help and it'll blow up in your face. I can honestly say that I left my anxiety unmanaged for a decade, and each year it got worse and worse, like it was always one step ahead of me regardless of how hard I tried to keep it in chains on my own.
Confide in your mom, that's okay, but don't burden her with a fear that doesn't have any reason to exist in your life. Trust me, twitching doesn't mean anything. If I could count a nickel for all the anxious people that twitch (and normal people that twitch), we'll I'd be pretty loaded.
Atta girl, stay away from that forum. It ain't for you, and you're not going to have a reason to post there. Start believing that you're healthy and work on this anxiety. And in your worst moments, tell yourself that if your worst fears did come true, what would you do? Absolutely nothing. You'd be enjoying your life as much as you could with whatever time you had left. You wouldn't be crying in your room waiting for the end. So don't do it now that you're healthy. Feel me?
Mommyof2boys
02-02-17, 19:04
I am crying reading your comment. It hurts so bad and I wish I could just TELL myself that I am alright and be okay. I know that's not how anxiety works. I do feel that if I had something terminal I would probably be less of a mass than I am now not knowing (although that's probably not true). The folks on the als forum who are suffering or watched someone suffer are more level-headed and whine way less than me (they NEVER whine actually). It is shameful that here I am living a healthy life since I have not been diagnosed with anything and still can't appreciate what that means. I just hope I can move past it no matter what. This feeling is worse than death. It is TORTURE. Monday cannot get here soon enough...
They are more level headed than most people suffering from anxiety, and most terminally ill people are. They don't have the time to waste on self pity. They want the end of their lives to be comfortable, and happy. No one wants to leave this world miserable.
Take an example from them, and live your life. It's okay to be anxious, it's okay to have intrusive thoughts. But it's not okay to throw your life, your plans, your school, your relationships, and everything else out the window because of fear. It's not real. It can't hurt you. You gotta learn to sit with the lion in the room until you realize the lion is actually just an annoying kitten pawing at your legs.
Death is a release. Suffering is torture. And we put ourselves through more suffering than we need to with mental illness. It's your mind, tame it.
I can sense the fear is real right now so what I'm about to say may not help. I've been there too, my fear was so intense that I lost 2 stone in 2 months. I know the hell youre going through now.
But, I HAD popcorn popping twitching in both calves for 7 MONTHS, and a few others elsewhere. I can 100% tell you that anxiety and stress definitely causes twitching.
As time passes and you realise that clinically you are fine, the twitching will decrease. I promise.
busterrufus
02-02-17, 20:40
Mommy2, I,ve had the twitching in both calves for 9 or 10 months, along with many other distressing symptoms. When the twitches first started they were continuous, now some days they are less frequent. It is frightening, but I do notice that generally they are not as noticeable if I am occupied and moving about. When caught in the anxiety cycle, one symptom can affect another, eg when abdominal pain causes me to move about less and then I feel the twitches more.
Hot baths sometimes help a little . I rubbed tiger balm on my legs a few times so that the extra heat distracted from the twitches, although I,m not actually recommending that, just commenting that the distraction helped a little. I don't bother to do that now..
Some people swear by supplements, magnesium, vit d etc. Maybe ask your Dr about this. Please update if you get any relief. Best wishes.
Mommyof2boys
02-02-17, 21:02
Thank you both. I am going to try to distract myself in some way.
My doctor that I was going to see on Monday was going to move my appointment back another week after I had waited for two weeks already. I tried to find another doctor. They are all booked up or aren't taking new patients or don't take my insurance. And all new patient appointments are scheduled 3 weeks out regardless. So I don't have even that small glimmer of hope that i had that I would be done with this soon.
I just made an appointment elsewhere for the 28th. So I have to wait another 4 weeks. 4 more weeks of this. I don't know how I'm going to cope....
---------- Post added at 16:02 ---------- Previous post was at 15:55 ----------
Hot baths help me too for a short time. I have noticed if I sit with my legs crossed or at a 90 angle they don't twitch as much. It all but stops when I move around. The anger that I just experienced with the doctor's office kept my mind off of it for a little bit.
It makes me feel better that other people are having similar symptoms. I hope you all get permanent relief from it. It is all consuming at this point, I can't imagine 9 or 17 months of it.
Twitching happens before weakness in less than 1 percent of ALS patients, and some doctors say it doesn't happen at all, and that they always present clinically with SOMETHING else whether UMN or LMN signs. My point is that your chances of having ALS right now are incredible low. One in millions type chance. If your grandma was the only one in your family who had, then it was sporadic. Familial ALS affects multiple family members.
Mommyof2boys
02-02-17, 21:35
Yes the only way i can convince myself that it wasn't FALS is that she had 8 children, who all had many children, who all had many children and our family just from her side is over 100 members, none of whom have ALS or any of the other diseases from that family (MS, Alzheimers, etc)
Her symptoms were way different.
My odds are very very low. But being the way that I am, I can easily convince myself that I am the exception... I try to look for connections TO ALS instead of AWAY from it, which is where I differ from a psychologically healthier person...
So I would 100% focus on altering that thought process. Stop trying to find reasons to feel anxious.
Are you currently having any kind of therapy or seeking help for your mental health issues? If I were you I would make that the focus of any kind of future GP appointment.
That will help cure your thoughts and symptoms.
Mommyof2boys
02-02-17, 21:45
I will bring it up when I do go. Unfortunately it'll be 4 weeks before I do get to see the doctor. I will just have to come up with a coping mechanism until then. Being busy seems to help a little. I always have house work to do with two boys and a fiance.. =( Not the most fun way to distract myself but any distraction is better than nothing!
Mommyof2boys
05-02-17, 23:50
I keep biting my lip now... I try and try to push all of this to the back of my mind then i get a big twitch or now i am biting my lip a lot and last night my tongue slipped between my teeth on the right side and i bit it in my sleep too... I am so scared still... Still going to just wait to see a doctor on the 28th.. really just venting...
I started a thread about twitching a few weeks ago. If you want to, go on all threads started by me, it's called twitching and starting to worry. I was actually overwhelmed by how many people replied saying they'd had twitches, for days months or even years. Because mine had gone on for a few weeks I was starting to worry. But you know what, now that I've moved onto another disease the twitches have pretty much stopped. Or I'm just not really paying attention. Infact, writing this has drawn my attention to the leg twitches I have! I would really try not to worry, just let them wash over you.
MND/ALS is not a slow process, and from what I know it gets rapidly worse very quickly. Try to ignore the twitching. If you're like me and move from illness to illness, you'll have forgotten about this when you move onto something else, same as I have. It's no fun at all, but it's the nature of the game with HA it seems.
Hope you feel better soon. X
Mommyof2boys
06-02-17, 03:29
Yes! All year last year I was completely obsessed with pvcs. I was having them every single day. The last one that I had that was bad and scared me happened like a few days before these twitches... I wish that I could divert my attention to some other disease or even better to nothing at all and live my life! I'm so tired of being scared!!!
Miznuvem0412
06-02-17, 04:21
Lol
My legs twitch a lot and my psychiatrist told me to try magnesium
I twitch mostly when I'm relaxed of falling asleep and I hate it with a passion . He assured me it was stress/anxiety / and the torturous insomnia
He told me to freak out if my twitches are crazy and extreme that may mean something else but I told him they are more like spasms and showed him how they looked . He said he once seen a case or cjd and some neurological disorder and the twitches were not spams but more extreme . I went to him with a fear of fatal insomnia and he assured me that symptoms are more severe and that I just have anxiety induced insomnia .
What is ALS I see this everywhere in these forums . I rather not google what that is but I'm sure it comes with more extreme symptoms
Do not Google ALS. I wish I never have. It took almost a year of my life from me.
Mommyof2boys
06-02-17, 15:58
Yes whatever you do do not Google als.
Now I cannot eat anything without biting my lip or cheek or tongue a little. But I am trying to tell myself it's because I am thinking about it and anxious to the MAX.
Of course whether I can make myself believe it is another story...
Biting your lip is not a symptom of ALS either lol. Relax.
tryingtosurvive1
08-02-17, 06:41
Hereditary ALS doesn't skip generations. On average 1/2 of offspring inherit it. Your grandmother's case was sporadic and . . . you don't have it. :)
I can say without a doubt you have nothing to worry about. Sounds like benign twitches to me. Trust me I wasted years going down this rabbit hole, it isn't worth it. Don't worry until you can no longer do something you once could.
Mommyof2boys
08-02-17, 22:14
Thank you both. I feel like I'm going insane. I was doing okay for like two days and now it's bothering me again. Twitches almost disappeared but I noticed them more today in one specific area. Did more balance tests and such and looked at my tongue. I read somewhere that tongue fascultations are never benign and of course mine is twitching uuuuuuugh I really hope that if I get a clear diagnosis I can put it behind me forever. I am eating and sleeping better and I don't want to get back to the place I was at a few weeks ago...
You can have benign twitches anywhere even the tongue.
The tongue twitching statement is only true where clinical weakness is involved. This was quoted by the neurologist who initially wrote it.
Mommyof2boys
09-02-17, 02:39
Awesome thanks i needed to hear that =( I pray I can move past this or ignore it. Man it is just so difficult... I feel so bad for anyone who is going through this...
Awesome thanks i needed to hear that =( I pray I can move past this or ignore it. Man it is just so difficult... I feel so bad for anyone who is going through this...
I so feel you! I am in your boat and the funny thing is yesterday I was worried about Parkinson's not ALS- it was only when my doctor said we need to rule out ALS that it sent me into a fit. It isn't that ALS hadn't crossed my mind before, but it was a thought a passing thought- I was more focused on Parkinson's than anything else and now poof ALS.
Mommyof2boys
09-02-17, 02:57
I just can't believe that a neuro would mention it to you like that. I have read many an ALS story (I don't recommend doing that for anyone with HA) and they wouldn't be told until the doctor was absolutely sure that it couldn't be anything else. It's a disease of exclusion, a terminal one that you don't just toss around like that. It really makes me question the quality of that doctor
It sounds like he or she was either doing it because you have insurance, or they just want to give you reassurance.
She was a rude doctor- wanted the emg before she even did the neuro exam. The exam came back normal. I asked her if it was all anxiety especially since the twitching stopped while on vacation- she told me I cannot diagnose you with anxiety, see a psychiatrist- or I am not a psychiatrist so I cannot diagnose you with anxiety. That kinda got under my skin.
Mommyof2boys
09-02-17, 04:16
This sounds like a horrible doctor. Wow. I would take anything they say with a grain of salt. Let the exams do the talking. So far it looks like you're in the clear with no clinical weakness-- a normal neuro would tell you to move on, that you're fine.
Mommyof2boys
21-02-17, 17:05
I have been trying to get in to see a doctor since the beginning of January about my twitching legs just to get some advice or peace of mind.
I went to my (then) doctor in my hometown because I was just visiting my parents and was able to get an appointment since I told them I was in distress. When I was in the waiting room, the lady at the front desk called me up and said my insurance was cancelled (I had recently had a renewal with my medicaid, and it always cuts everything off for a while or does something screwy). So I left in agony and almost in tears, frustrated that I was so close to being able to speak with my life long doctor about a terrifying symptom.
Came back to where I live now with my fiance and switched to another doctor after a week of waiting for my symptoms to subside (which they never did). Got an a new appointment for the beginning of February with the new doctor, just as I slipped into the darkest circle of this fear and anxiety driven trip, legs constantly twitching, constantly checking my balance and constantly finding new symptoms. I didn't eat or drink anything hardly for a week to the point that my mother came to get my youngest son to try to alleviate some stress and my fiancee was constantly asking me when my appointment was because he was tired of my worrying and was concerned about my mental well being.
I call the doctor's office and beg for them to move my appointment up because I am concerning my family and not functioning well. They move my appointment up by four days and it is still over a week away. But they tell me that if something sooner opens up they will contact me.
That doctor called two days before my appointment and said that the doctor would be out of town on that day and pushed it back two weeks. I told them that this was unacceptable and that the only reason I had that appointment was because I begged for it to be moved up because of all the anguish I was suffering waiting to see a doctor. I told them I would get a new doctor.
After a few hours trying to find a doctor that would accept me in this town, I found a clinic-type doctor's office that would take me. I made an appointment for the 28th of February, and while it was still 3 weeks in the future I felt pretty confident and tried to brush off my symptoms and hold out for the doctor.
TODAY. I GET A CALL from this new doctor's office, saying that this doctor will not be in the office next Tuesday and they must reschedule. I have to wait until March 14th to be seen by them. It has been the most excruciating 3 months of my life (5-6 really since my twitching started in October) and I really have no options at this point. I don't know what to do. My legs continue to twitch. I am doing better about not reading on forums about ALS but recently did just one more time and saw a post that said that those with familial ALS can twitch for months and months before symptoms, and that they are typically younger. My grandmother had it and though they said at the time that it was sporadic but that was in the 80s and they have discovered several new genes for it that may have gone undetected. I thought I was going to be okay but I can't do this.... I can't do this waiting anymore. I need to speak to a doctor or something I just am losing my god forsaken mind....
Well I am sorry your appointment got moved around. it is aggravating. My eldest was supposed to see the neuro for follow-up in December. I had a thing at work so had to reschedule. It was to January 31. Then a week before we were called and doc cancelled. Appointment was moved to 2/20/17. Just as I was walking out door to work yesterday, th phone rings and the appointment was rescheduled AGAIN! Now it is 3/2/17 at 3:15. I am really hoping this one goes off as she hasn't seen the neuro since 8/23/16.
So, yeah, UGH....
On your end---twitching is not anything to worry over. hopefully you will believe the doctor when he tells you as much. Of course, nowadays docs are so knee jerk in ordering cya and peace of mind testing, so don't be surprised if you end up with mris and emgs, etc... That is just how doc's are now...
Mommyof2boys
21-02-17, 23:02
I understand that they are like this when it's not life threatening and sure there is nothing wrong with me other than twitching but it is so hard to wait. Maybe I'll be lucky and everything will stop before I go see any doctor... I hate that your daughter is being made to wait for a follow up. I would be a nervous wreck. But on the plus side they must not be concerned if they keep putting it off like that.
I understand that they are like this when it's not life threatening and sure there is nothing wrong with me other than twitching but it is so hard to wait. Maybe I'll be lucky and everything will stop before I go see any doctor... I hate that your daughter is being made to wait for a follow up. I would be a nervous wreck. But on the plus side they must not be concerned if they keep putting it off like that.
I am pretty sure your twitching won't stop before the appointment because you are very afraid of them and your mind and body are in over reactive mode. Symptoms generally don't stop when one is very frightened and think they are sinister. That is how HA works. ;) . twitching really is not going to be from scary neuro nasty.
Regarding my daughter: Thank you. But I am not a nervous wreck. I am aggravated. She has been a patient of his for about 7 years and sees him every 3-4 months. It has been just about 6 months. We did adjust meds and stop another in November over the phone. But in the last month or so her seizures have increased. Which is an ongoing issue with people in my daughter's situation. Saturday she had 1 and Sunday 3. I didn't bother calling cuz she was to see him yesterday and figured we'd discuss it all then. So now gonna wait until next week. Obviously I can call and talk to his nurse and he would get back to me about the seizure increase and he would tell me about a new seizure med we could try and blah, blah. The usual drill. But I'd rather do that face to face., ya know.
Anyway, sorry your appointment was pushed back.
---------- Post added at 19:16 ---------- Previous post was at 19:03 ----------
The last few months have been challenging with her to say the least. I just was looking forward to seating in the exam room yesterday.
Go to the emergency room. They have to take you. Get a clinical exam.
Mommyof2boys
22-02-17, 09:20
I feel so bad for your daughter :( I really hope she gets seen soon. I have two sons and when they are sick I want help fast. I couldn't imagine seeing them go through having seizures. And then especially having to wait to see a Dr about them. That doesn't seem right at all.
---------- Post added at 04:20 ---------- Previous post was at 04:17 ----------
I think I am going to go to a clinic today. While laying down after having just woken up tonight I felt my left little toes all flex back twice for no reason. It felt like a motion I would have had to do on purpose but happened on its own. I am beyond terrified now. I can't take the wait.
Tense bodies do that. It happens to me. Basically it is a cramp. My thumb will pull in like that. Actually back when I was a tense mess, my whole hand would do it---claw up. I do have issues with disks in my neck which contributes but since I calmed down the whole hand thing stopped happening. I am sure the doctor is going to tell you this is not ALS.
---------- Post added at 05:40 ---------- Previous post was at 05:37 ----------
. I feel so bad for your daughter :( I really hope she gets seen soon. I have two sons and when they are sick I want help fast. I couldn't imagine s
Basically my fault. I started the the first cancellation back in December. Haha. she will be okay. She has had seizures since she was 13. So a very long time. We will end up trying another seizure med or increase the dosage of another. The life of. A person. With intractable seizures. It Isn't fun and can be difficult because the potential injuries due to falls. However I am glad her seizures are not as bad as they could be.
Let is know how your clonic visit goes.
Mommyof2boys
25-02-17, 04:11
Okay new symptom that is perplexing me (by the way I couldn't make it to the clinic. I am almost scared to go to a doctor at this point...)
My left calf and foot are the "hot spots" here lately, as the right leg has died down dramatically with twitches. Well, the back of my calf has been stinging and almost burning now with the twitches as well as slightly cramping throughout the day. It really hurts. I don't know what is going on but I do know I've read this symptom before on the ALS forum recently. I try to tell myself that I get these symptoms because I read about them.. On one post a woman had felt one muscle on her shoulder start cramping and twitching uncontrollably and poof the same night I read it my left thigh did exactly that for an entire day. But mine went away, hers didn't! Big difference. Now this. I just don't know. I hope this isn't bothering anyone. I feel like this post is my journal and I know I need to see a dr to truly get a diagnosis, and I have had so much wonderful advice on here I truly appreciate it. If it's too much I certainly will stop I can't risk being kicked off a forum that has provided me so much help and comfort...
That's a classic symptom of BFS. You can read about hundreds of people who have muscle pain from BFS. Clinical weakness is ALS not twitching. Calm down and stop reading horror stories.
Mommyof2boys
25-02-17, 04:41
Thank you I need to go back to that forum again. And as I type this I am staring at the dent on the back of my left thumb. I feel like a nutcase. =/ :wacko:
You've been given a ridiculous amount of reassurance from plenty of people who have gone through this same exact fear, and yet you're still visiting the als forums to try and disprove everything everyone has said.
Go to your doctor. Get on some medication if this obsession is so incessant. Stop going on the als forums if you ever want to feel like a normal human being again. And try to go a week without seeking reassurance or proving the death sentence you think you're facing.
Mommyof2boys
09-03-17, 17:24
Swore I wouldn't post again till i went to the doctor but I have been having a lot of twitching in my thumb/index finger region in my left hand and noticeable dents in my knuckle areas there and i have been trying to fight off fears that this was als related but I just tried to hit the a button on my wii remote as fast as I could with both thumbs and could do it twice as fast with my right thumb as with my left and i remember reading about an als researcher who got als and his test was to tap as fast as he could with his finger and noticed that he could not tap as fast with his finger as he normally could and that is how he knew he had it. Is this a normal thing? I was doing pretty good until this and now i literally feel like I'm having a heart attack.
Atrophy is not denting and weakness comes before atrophy anyway. Please get a grip on this.
Please... PLEASE do not go to or post on the ALS forums. Reading will fuel your fear and posting in light of your real illness (anxiety) is highly disrespectful to those actually suffering from the disease. If you do post there and are told you present no symptoms, accept it and move on. Continuing to post will get you banned. I know of several members who have done so and been banned.
Positive thoughts
Mommyof2boys
09-03-17, 20:32
Thankfully have not even thought of posting there and have made a commitment to that.
I wish every symptom I had would stop. There have been some that went away and I could attribute it to anxiety or something else (weak, jelly-like feeling in arms and legs that came and went, scalloped tongue that comes and goes that I have attributed to gritting teeth and general stress, jerking when trying to go to sleep, and most of my twitches have gone but I still have some in fingers, and my left leg.) I am so thankful for this forum as an outlet because until I am diagnosed with anything (or nothing) I am just anxious and healthy and able to exist as I always have and need to embrace that and live my life to the fullest which is how I've been doing lately as much as possible anyways. But then I start noticing a symptom I hadn't before and lo and behold it too is a symptom (pain in side when sitting up, twitching of thumb and forefinger) and then I reach the top of the rollercoaster once again. This is horrible. And I wish I could just push it to the back of my mind completely. But it always rears its ugly head. I know it is infuriating people in my life and now, thanks to this forum, strangers on the internet too lol but my appointment is next Tuesday and I have a feeling I will be getting a Neuro appointment too and maybe I can find answers soon. Until then thank you all for your reassurance and mostly for just being here to listen.
---------- Post added at 15:32 ---------- Previous post was at 15:30 ----------
I had read about the man who researched als and developed it in January when this true panic all began. I see now why you were saying that.
Don't be offended if the neurologist laughs at you and tells you to take a chill pill. Most do.
The guy you're talking about noticed weakness in his hand, he then tested his fingers and noticed a slowness to his taps (as in, his fingers weren't working probably, not feeling weird but literally a noticeable slow pattern to the movement) and was suspicious. He went and got tested, and it was confirmed. He was a trained neurologist and als researcher. He wasn't just tapping his fingers for the h*ll of it, he was doing it because he knew something was wrong with his hand.
It's depressing to see how many people lack even the slightest bit of rationality. You might as well be going to buy a lottery ticket and expecting to win fearing this disease. Seriously, get a grip on your anxiety asap. Most of us went to therapy or meds due to this fear. But most of us should have been on something or seeing someone way before the als phobia rabbit hole crap happened.
Does this reassurance really help you in any way? It's all very hollow. Unless you believe you don't have als, you'll keep thinking you *might* have it or do have it. Unless you stop fearing this disease, it'll continue to lurk in your mind. Until you stop fearing death, you will continue to be plagued by the fear of illness.
I literally had to take all my fatalism and increase it by 100 to get over my hypochondria. I stopped seeing myself as the most important person on the planet, I stopped feeling as though my life was too important to end so soon, I stopped thinking about how those around me would suffer without me, I stopped trying to convince myself that the universe owes me a good life because I've been through so much bad crap. I had to come to terms with reality: life is chaos, most of the time we don't have a choice in what happens, and we have to be okay with that or else we're screwed. The point is, I'm going to die. I don't know when and I don't know how but one day I will die. The last thing I want in this life is to look back on all my good days and regret how I wasted them. I refuse that. When I die I want to die with some peace and the knowledge that I lived my life the way I wanted to live it, and that I was satisfied.
Seriously, stop wasting your time. If anything, stories of people with terminal illnesses should be a reinforcement for you to start living your life. I've seen plenty of people through the dying process and all of them were happier people than me, even in illness. What does that say about my mental health? It says that it's screwed. It says that I need to get a grip and start enjoying my life.
So with that, you have a choice. You wanna keep wasting your time? Go ahead. You wanna be stuck in this fear and make yourself physically sick because of anxiety? Go ahead. But you're going to regret every minute of it later on, just like we all did. If I could go back and stop myself from losing it because of this stupid fear, I would have. Because people with als have a better attitude about their diagnosis than I had with the false idea that I may be ill. That's sad on my part. It's sad on your part too.
Until you get diagnosed with something, there ain't no point in what you're feeling. It ain't real, and it's just a waste of time that could have been better spent.
*mic drop* Hancock signing off.
Mommyof2boys
10-03-17, 17:55
I only just saw your reply Hancock and it has really made me feel a lot better to read it. My fear of death has been a lifelong battle. When I was 6 my scalp would go numb and I would beg to go to the hospital for it. I thought I got AIDS from the toilet seat at Walmart when I was like 8. I went through a period of severe hand-washing/sanitizing at age 9 that my hands were bleeding and coarse. I have always had a very healthy fear of death and listened very closely to my body. TOO closely. I have never been rational about it.
Having children exacerbated it because now I really do have something that I NEED to live for, my sons. Watching them grow up has been the biggest thrill of my life and I want to spend many years watching them grow, change, and become big, strong men.
Most importantly, they have nowhere to go if I do pass. I have a fiance who loves them and treats them like they're his own, but they are not and we've only been in his life for almost 2 years. My parents would not get custody, and their father and his family (which is where they would end up) are all drug addicts. I feel like the worst parent ever to have had children and put them in this precarious situation. If I die, they will definitely have a horrible life. And it is my own doing. Maybe this has fueled this health anxiety fire. But for their sake I always try to rationalize and at least APPEAR to be sane and happy for them!
But this twitching has really caught me off guard. It's true, I do not truly believe I don't have ALS. Last night my fiance tried to get me to say "I don't have ALS" just to see if I could and I couldn't. It is bounced around in my head like a ping pong ball and one day I'm okay and one day I am stuck to the chair ignoring life around me and paying close attention to my body. I am a shell of my former self. However, last year I was exactly this way about my heart flutters. And the year before that it was heart flutters too. There has always been something that I worry about to the extent that it steals my life.
I have vowed, SOLEMNLY, that once I see my doctor (this coming Tuesday) and complete any tests I need to, and once I am diagnosed one way or another I am requesting therapy. I need help. My children deserve a mother who loves life and lives it for them. My fiance deserves better too. I deserve better. This is not living.
I really appreciate everything you have said. Thank you so much for taking the time to say it. I needed to hear it.
Mommyof2boys
14-03-17, 16:12
Doctor's appointment today went.. well not bad. I told her everything, I told her about my als fears and family history. She tested my reflexes, strength and balance. Everything passed with flying colors but she has referred me to a neurologist. I don't know what tests they will run, but I do know that she said she didn't want to run an MRI. She did say that they may want to do an EEG and a nerve conduction test. The fact that she didn't mention an EMG or ALS to me makes me think maybe she doesn't really believe it's that. She didn't say it wasn't ALS either BUT she is only a PCP. It's up to the neurologist to pull the trigger on that. So now I have to wait until the neurologist calls and wait for that appointment. But the fact that the babinski was normal is comforting at least..
Doctor's appointment today went.. well not bad. I told her everything, I told her about my als fears and family history. She tested my reflexes, strength and balance. Everything passed with flying colors but she has referred me to a neurologist. I don't know what tests they will run, but I do know that she said she didn't want to run an MRI. She did say that they may want to do an EEG and a nerve conduction test. The fact that she didn't mention an EMG or ALS to me makes me think maybe she doesn't really believe it's that. She didn't say it wasn't ALS either BUT she is only a PCP. It's up to the neurologist to pull the trigger on that. So now I have to wait until the neurologist calls and wait for that appointment. But the fact that the babinski was normal is comforting at least..
Ok... here's your "Told ya so" which I'm 100% sure will be affirmed by the neurologist. All that is a CYA medicine (cover your ass) ;) As far as being "only a PCP"? Just because they aren't specialized in one aspect of medicine doesn't discount at all their skills and knowledge.
I think you can start looking into therapy too. As you said, living like this is not really living. Your family deserves and most of all YOU deserve it!
Positive thoughts
Mommyof2boys
14-03-17, 16:36
Thank you! =) I didn't mean to insult the doctor, I could have worded it better lol. It was very competent of her to reserve a neurological diagnosis for a neurologist, for the CYA thing too =P Once I get to the neurologist and am reassured that it is not ALS I will be going to therapy. I do have to do a follow up with this doctor for blood tests so if that happens to fall on a day after I've been to the neuro I will ask for some guidance in the therapy arena.
I appreciate everything, Fishmanpa!
Mommyof2boys
23-03-17, 00:24
Still no neurologist appointment. Waiting on that phone call.
I had been hoping and praying that my symptoms would have just disappeared by now. But it just seems like they are spreading and evolving. Lots of facial twitching. Lips, cheeks, nose, ears. Tongue twitches I can now feel. The leg twitching had settled into my left leg and calf and every single twitch I have is always on the left side. I may literally only have one twitch a day on the right side of my body whereas the left is a fireworks show. The left side of my stomach, my side, my back and neck all twitch regularly. My left thumb and forefinger have been hit pretty hard. A spasm in my left thumb was so severe my mom could watch it and it scared me. It lasted a whole ride from a store to my house. I have a burning sensation in my left calf from just being exhausted and tired from constant twitching. I can see a dent now in that calf. I want to be causing this with my mind somehow but it has been so long and so persistent that I know I am not causing this. My mind is definitely not that strong.
It is coming up on six months.
I don't even work on planning my wedding anymore.
I don't want to try on dresses.
I don't think I will even walk down the aisle.
And all I can do is wait.
And twitch....
Yup that's all u can do but don't wait, LIVE and twitch. You have all the symptoms of BFS especially the face twitches. I feel your pain. My right calf twitches all day long. Them I get random twitches in my face eyes arms thigh ass stomach chest you name it. I've seen the Neuro like 5 times and had an EMG blood work clinical exam all clear. Expect to twitch stop waiting for it. Just accept them and ignore them. Know that they are going to happen but it's not harming you. It sucks ass but it's harmless. Stop letting them ruin your life. I feel mine the most when I'm sitting alone staring at my calf, and I bet u do too lol. When I'm out having fun I don't notice them until I think I wonder if I'm twitching. So try to stop looking stuff up stop timing the twitches, and go plan your wedding go work out or walk.
tryingtosurvive1
23-03-17, 04:44
I really think you're okay. You're twitching all over and super stressed.
Everything I read suggests that wild all-over twitching is nothing serious. Neuromuscular problems are more focused. I have a non-terminal problem and it's quite foot-centric.
Also, if you had familial ALS it would be showing up EVERYWHERE. The genes are dominant ones that affect on average 50% of offspring. So it's not like one person has it, many people do. They also don't skip generations. The milder thing I have (CMT) has the same genetic properties and is shared by my sister, my mother, my late grandfather, my great-grandfather and a lot of cousins. Familial ALS works the same way.
In sum: mere twitching, especially all over, is BFS. Stress.
Familial ALS is not just one person and doesn't skip generation.
For God's sake, twitching is NOT ALS. It's not. You don't have it. NO ONE with ALS passes a clinical with "flying colors." You talk about facial twitching, which actually points AWAY from ALS. Your last post about not wanting to plan your marriage proves you need therapy now, not later.
For God's sake, twitching is NOT ALS. It's not. You don't have it. NO ONE with ALS passes a clinical with "flying colors." You talk about facial twitching, which actually points AWAY from ALS. Your last post about not wanting to plan your marriage proves you need therapy now, not later.
Drill this into your brain and stop seeking reassurance for a disease you do not have (and probably will never have).
Mommyof2boys
04-04-17, 14:42
So I had an appointment yesterday to go over my blood work. Believe it or not, a freaking TORNADO came through while I was in the waiting room and the electricity was cut off, so after having waited for nearly an hour, they told me to leave and they would reschedule for next month. Isn't that awesome. (I will have already been to the Neuro by then, as my appointment with them is the 12th of this month).
ANYWAY.
I have been trying desperately to find any other condition to fit my symptoms when I came across this website http://www.livestrong.com/article/303187-potassium-levels-in-cushings-disease/
Cushings disease results from overexposure of cortisol from the pituitary gland, and causes weight gain mainly in midsection (definitely have), weight gain and fat deposits in face and around neck (have!), muscle weakness (sometimes have), and can also have a link to potassium deficiencies which causes muscle spasms, cramping and twitches (DEFINITELY have). So I guess I'm going to use this as a ray of hope and maybe some others who are having my issues can too.
As SOON as I figure out definitively what is wrong I will let you guys know.
MyNameIsTerry
04-04-17, 16:27
Excessive cortisol causes weight gain in the trunk and face/neck anyway. Cushings takes it further than that.
Anxiety means higher than normal cortisol too. But Cushings will mean symptoms seen outside of anxiety.
I was funnily enough reading about it myself the other day as I use inhalers, which have links to Cushings, so I was interested in the cortisol link as that's something I want to know more about.
Hi
My dog has Cushings and from what I know her liver function tests were abnormal
xx
Mommyof2boys
04-04-17, 17:25
There's no doubt I have severe anxiety and always have especially after having kids. So who knows. Blood test results would help so much
Stupid tornado :(
Floxing is something that comes up on the als forum sometimes and I went through months and months of taking rounds of Ciproflaxacin (an antibiotic) for recurring utis. So maybe this could be another possible cause for me and others? https://floxiehope.com/about/
The human body is so incredibly complex so until I have an emg and doctor's diagnosis I am trying to find anything else it could be (including bfs)
Unless you get help for the health anxiety, your clean EMG might buy you a few weeks or months before you think "it was done too early" or "it was done on the wrong side" or "now Im afraid I have bulbar." I've been in the BFS scene a long time and have seen this play out many times, unfortunately.
something that comes up on the als forum sometimes
Please... please... please stay off the ALS forums! I know several members here that have been posting there and it's disrespectful beyond words. Even if you're not posting, reading the posts will just wind up your anxiety.
Please read this!
Do I Have ALS?
First, in spite of reading this, it is a question that can only be properly answered by a doctor seeing and examining you. We can offer an opinion as to whether your symptoms sound like our experience of ALS. We can give our best advice on whether to push for another opinion. However, first and foremost if you have a worrisome symptom see your doctor. If you have not yet done so and followed their recommendations don't expect us to say anything different
Symptoms
The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech. If you don’t have any of these, why are you here?
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work
See also EMG, weakness and atrophy
Atrophy
Atrophy, or muscle wasting, is a frequent early symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless.
Hyperreflexia
Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Other “Symptoms”—
Twitching
If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease..
This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."
Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately
Also, see Twitching, false alarm
Pain
If you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.
Other Issues—
Anxiety
Anxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.
AGE
For those of you who are under 30:
The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.
So let's do some numbers:
2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).
Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".
Please also take into account that a high proportion of young onset ALS is familial so if you do not have at least 2 blood relatives with ALS your chances are even less than above statistics suggest.
FAMILY HISTORY
Having one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum
EMGs
Does a dirty (abnormal) EMG mean I have ALS?
EMG, properly done, is the gold standard test for ALS. But an abnormal EMG can indicate hundreds of other, non-fatal, diseases. So listen to your doctor.
My EMG was done “too early”
EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.
Here is a simplified summary:
1. ALS causes nerves to die.
2. EMG detects effects of nerves dying.
3. For ALS, muscles get weak and atrophy when they lose their nerves (no pun intended).
4. Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALS
However, an abnormal EMG does not necessarily mean ALS so a so- called dirty EMG needs to be interpreted by your doctor. There are many other,more common things that will cause EMG changes and some of those findings will be PART of what is seen in ALS. Listen to your doctor and do not try to second-guess him/her
Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you
Another EMG question that is frequently asked is if I have ALS in one location but the EMG was done elsewhere in my body would it still show? The answer is maybe, however if you are having symptoms in several areas and the neurologist only tests one if that is negstive that is sufficient. There is no need to EMG every muscle that is symptomatic
You must also realize the doctors know their anatomy. Just because you see/ feel something in one specific location does not mean that is exactly where the needle goes. It may be above below or surrounding. If you have symptoms only in your left hand it is possible that an EMG of your right foot would miss something. But if it is your left hand and they examine that extremity don't worry
Positive thoughts
Mommyof2boys
14-04-17, 00:19
So I still haven't spoken with my doctor about my blood test results but I just got a call from the pharmacy and I had a prescription for vitamin d up there. So I guess I have a vitamin D deficiency, but I don't know if that would cause twitching. I am hoping so though. Still pending a visit to my Neurologist on the 21st.
MyNameIsTerry
14-04-17, 00:47
Speaking to your doctor is the obvious thing here. It could be that your vitamin D levels are a bit low, not necessarily deficient. There is a choice of a couple of ways to treat that and from what I understand, which method they choose is based on how deficient you are or whether you are just near to being.
Vitamin D works with calcium, lack of calcium has links to twitching. So, your doctor may have found something to improve this symptom. However, you know there is still the anxiety to sort out regardless and it could be that the twitches are from that too.
Mommyof2boys
23-04-17, 04:30
Well I saw the Neuro for the first time Friday. I told him everything that was going on, he asked me some questions, only asked about family history with my parents and siblings so he didn't know that my grandmother had ALS and I never once brought it up. He checked my strength, coordination, reflexes and it was all great. He looked for the twitches but did not see any at the time. He did not do more advanced neurological physical tests (hoffmans, tenting of the mouth, clonus tests). He DID do a Babinski and look at my tongue (I have had a regular twitch on the left side of my tongue since all of this began, not that the muscle twitches but it looks almost like a pulse under the skin, but irregular and sporadic unlike a heartbeat). After all of this he told me he was not concerned that it was serious because after such a long time with a serious condition I would be presenting with other symptoms including weakness which I do not have. He has scheduled me for a Nerve Conduction Test and an EMG. I will be taking this on May 3rd and doing a follow up with him on May 31st. He told me that there is a disorder called benign myoclonus where people only twitch and there is no underlying disease (I guess he meant BFS or something similar). My fear has been alleviated slightly but at the same time it hasn't. BUT. My birthday is the 17th of May. And I will be done with my classes at college. And my son's summer vacation begins. I am gonna make this the best month of my life and enjoy the hell out of it. I am so exhausted from fear. It's out of my hands anyways. I will definitely be posting updates. Hoping for the best, preparing for the worst...
---------- Post added at 23:30 ---------- Previous post was at 23:28 ----------
He also did more blood work and asked that I request the results from the blood work my other doctor did so he could look at that too.
MyNameIsTerry
23-04-17, 05:01
I am gonna make this the best month of my life and enjoy the hell out of it.
Best thing I've heard! I hope you do.
A for the benign myoclonus, since there ae various types of this I would expect he means...
Physiological myoclonus
This type of myoclonus occurs in normal, healthy people and rarely needs treatment. Examples include:
Hiccups
Sleep starts
Shakes or spasms due to anxiety or exercise
Infant muscle twitching during sleep or after a feeding
Essential myoclonus
Essential myoclonus occurs on its own, usually without other symptoms and without being related to any underlying illness. The cause of essential myoclonus is often unexplained (idiopathic) or, in some cases, hereditary.
One of those two, but I would be putting my money on physiological because:
This type of myoclonus occurs in normal, healthy people and rarely needs treatment
AND
Sleep starts
Shakes or spasms due to anxiety or exercise
(My bolding)
The other two categories need treatment and he would have spotted all of that or known to follow them up. He's ruling out to reach the benign.
ElectricAlice
23-04-17, 17:26
Please... please... please stay off the ALS forums! I know several members here that have been posting there and it's disrespectful beyond words. Even if you're not posting, reading the posts will just wind up your anxiety.
Please read this!
Do I Have ALS?
First, in spite of reading this, it is a question that can only be properly answered by a doctor seeing and examining you. We can offer an opinion as to whether your symptoms sound like our experience of ALS. We can give our best advice on whether to push for another opinion. However, first and foremost if you have a worrisome symptom see your doctor. If you have not yet done so and followed their recommendations don't expect us to say anything different
Symptoms
The major initial symptoms of ALS are clinical weakness, atrophy and hyperreflexia. Some people may have slurred speech. If you don’t have any of these, why are you here?
Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.
It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work
See also EMG, weakness and atrophy
Atrophy
Atrophy, or muscle wasting, is a frequent early symptom of ALS, but it is best judged by your PCP (primary care physician) or neurologist. If you are trying to judge it yourself, the atrophy must show a measurable difference between left and right sides, or between today and past measurements taken in the same manner (and hopefully by the same person). But remember, no human body is perfectly symmetrical and small differences are normal. Dents, dimples and other indentations in a muscle surface are common and generally meaningless.
Hyperreflexia
Hyperreflexia, or overactive reflexes, cannot be judged by you. This determination must be made by your PCP or neurologist. Slightly overactive reflexes are not uncommon and, especially if they are bilateral, may be meaningless.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Other “Symptoms”—
Twitching
If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease..
This is taken from the post of a member who saw Dr Orla Hardiman a leading ALS specialist. "I asked her about contradictory information about fasics being a precursor of MND. Here is her answer 1. As you know, fasics are common in patients with MND. But we don't look for fascics to suspect MND, we look for weakness, atrophy or change in reflexes.2. Fasics themselves are no real indicator of MND or any other disease.3. In most cases, fasics are of benign origin.4. I have NEVER had a patient with BFS who progressed in MND. And I had a lots of MND (and BFS) patients in my clinical practice.5. In most cases PALS don't even notice fasics by themselves. Usually their spouse, or someone else is the first one who notices them."
Check out Benign Fasciculation Syndrome (BFS) for the FAQ. Please note the forum administrator is no longer active so new members can not join. bfsrecovery.com appears to be nonfunctional unfortunately
Also, see Twitching, false alarm
Pain
If you have pain, aches, tingling, soreness, etc., these point away from ALS. ALS is a disease of the motor nerves, not the sensory nerves. There can be pain in ALS, but it is almost always well into the disease process, when the muscles can no longer hold the joints together or when immobility has caused frozen joints, bedsores, etc.
Other Issues—
Anxiety
Anxiety can be a real problem that can endanger your physical health. It is what leads many folks to this forum, but it is a self-fueling fire—the more anxious you become, the more twitches you will have, the more you obsess with perceived weakness in your arm or leg or hand, the more dents you will find… and the more you will become convinced you have atrophy. If you can’t stop using the internet to diagnose your problems, or if you cannot stay away from this forum, that should tell you something important about your mental health.
AGE
For those of you who are under 30:
The incidence of ALS is roughly 2 in every 100,000 . . . and of that . . . only 5% are diagnosed prior to the age of 30 . . . and the further away from 30 you are, the more diminished your chances.
So let's do some numbers:
2/100,000 is 0.002% chance (which is about the same chances of getting hit by lightning according to the Red Cross).
Now let's take your age into consideration. Again, only 5% are diagnosed prior to age 30, so to get that percentage, simply take 0.002% and multiply it by 5% (i.e. 0.05). That gives a percentage of 0.0001% or a 1 in million chance . . . and that's at best. Again, the further away from 30 you are, the more diminished your chances".
Please also take into account that a high proportion of young onset ALS is familial so if you do not have at least 2 blood relatives with ALS your chances are even less than above statistics suggest.
FAMILY HISTORY
Having one relative with ALS does not significantly raise your risk of getting it. For more information read the sticky in the FALS subforum
EMGs
Does a dirty (abnormal) EMG mean I have ALS?
EMG, properly done, is the gold standard test for ALS. But an abnormal EMG can indicate hundreds of other, non-fatal, diseases. So listen to your doctor.
My EMG was done “too early”
EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness. An EMG will detect that process long before you can feel it.
Here is a simplified summary:
1. ALS causes nerves to die.
2. EMG detects effects of nerves dying.
3. For ALS, muscles get weak and atrophy when they lose their nerves (no pun intended).
4. Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALS
However, an abnormal EMG does not necessarily mean ALS so a so- called dirty EMG needs to be interpreted by your doctor. There are many other,more common things that will cause EMG changes and some of those findings will be PART of what is seen in ALS. Listen to your doctor and do not try to second-guess him/her
Why do I see people saying their EMGs were normal when their ALS started? For those people who are accurately reporting their diagnosis the answer probably is that their ALS started in their Upper Motor Neurons and then progressed to the Lower Motor Neurons. Upper Motor Neuron disease is found on clinical exam so these people were not told they were fine. They had an abnormal exam and the neurologist knew there was something seriously wrong. If your exam was fine ( or just some brisk reflexes which are normal in many cases) this is NOT you
Another EMG question that is frequently asked is if I have ALS in one location but the EMG was done elsewhere in my body would it still show? The answer is maybe, however if you are having symptoms in several areas and the neurologist only tests one if that is negstive that is sufficient. There is no need to EMG every muscle that is symptomatic
You must also realize the doctors know their anatomy. Just because you see/ feel something in one specific location does not mean that is exactly where the needle goes. It may be above below or surrounding. If you have symptoms only in your left hand it is possible that an EMG of your right foot would miss something. But if it is your left hand and they examine that extremity don't worry
Positive thoughts
This is an INCREDIBLY informative and amazing post. I've never dared to Google or consider ALS as I've seen the rabbit hole and it is deep!
Please do one for MS now :roflmao:
Mommyof2boys
12-05-17, 03:10
Well I had my emg today. Man oh man it hurt more than I expected, especially in one muscle in my left calf. I also had a nerve conduction test done right before. That was not terrible... All in all I am not thinking about it as much lately mostly out of pure exhaustion. I mean what can I do...? Nothing. So I'm just waiting. Of course the Neuro seemed concerned that there was a popping sound in my left leg and he asked me to relax it but I told him it was already relaxed. He looked even more concerned then.
But also this neuro answered two personal calls while working on me so.... Ugh.
Also I just got accepted into the nursing program I was working toward before all of this and I start actual nursing classes Monday morning.
And my fiance just got an amazing new job and things look so up.
I don't want this stupid disease to even be on my radar anymore. And yet I still twitch....
Well when the 31st rolls around I will update once again.
Thanks for listening :)
Please do one for MS now :roflmao:
What, like this sticky post in this forum? ;)
http://www.nomorepanic.co.uk/showthread.php?t=42556
This is an INCREDIBLY informative and amazing post. I've never dared to Google or consider ALS as I've seen the rabbit hole and it is deep!
Ditto, thank you, Fishmanpa!
Please do one for MS now :roflmao:
Ditto this as well :)
Well I had my emg today. Man oh man it hurt more than I expected, especially in one muscle in my left calf. I also had a nerve conduction test done right before. That was not terrible... All in all I am not thinking about it as much lately mostly out of pure exhaustion. I mean what can I do...? Nothing. So I'm just waiting. Of course the Neuro seemed concerned that there was a popping sound in my left leg and he asked me to relax it but I told him it was already relaxed. He looked even more concerned then.
But also this neuro answered two personal calls while working on me so.... Ugh.
Also I just got accepted into the nursing program I was working toward before all of this and I start actual nursing classes Monday morning.
And my fiance just got an amazing new job and things look so up.
I don't want this stupid disease to even be on my radar anymore. And yet I still twitch....
Well when the 31st rolls around I will update once again.
Thanks for listening :)
How are you doing now, Mommyof2boys?
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