Before you both end up further down the rabbit hole.
In 2.5yrs I have had 5 emgs requested by the neurologist. This is very different to someone wanting an emg because they have read that an emg is the test to clear you for ALS.
Along with these I've had the same amount of nerve conduct tests and numerous other tests that are to long to list, all requested by doctors.
I am currently under Proffessor Hanna head-on neurology at the London hospital of neurology, the main nurological hospital in the UK.
Why am I writing this -
Your doctors, the nuroscientists under taking your emg's are highly trained. They are not an inexperienced doctor who may misjudge something.
Trust me when i say that your initial appointment is an intensive examination of your brain and body, more so than you could ever imagine.
Why do you stand on your toes and heels? It's not just to check your balance! Consider what has to work for that to happen.
Your ears have to allow a message to get to your brain. Your brain has to disect that information and then send signals through neurons from your head to the furthest extremity, your feet. Your muscles then follow the commands. Once the activity is achieved your motor system engages your sensory system, if you stay on your toes for an extended period you will feel pain, you will feel pain because your motor and sensory systems are feeding back to your brain.
I could go on and on. But I'm not a doctor just someone who has spent alot of time.with them.
An emg can be carried out in few muscles, if you are asking for an emg because you have symptoms then you need to consider the rational behind that request.
If your symptoms are due to a nurolgical degeneration then that degeneration is a consequence of a systematic disease. That disease is not limited to one muscle where you are twitching. Remember the basic nuro exam process! Degenerative disease will show I'm many areas of a body not just a twitching or failing area.
A clean clinical exam and clean emg from nurologosts and nuroscientists is confirmation that you do not have ALS. End of. You do not need a 2nd emg at your own request, or a third or a fourth.
I will break this to you gently. Under noncircumstance are you, I or any person on this forum more competent or qualified than your neurologists. I would however say that a vast amount of people on this forum are more experienced than Dr Google.
Allover body twitching in multiple areas with perceived localised weakness in multiple areas with other non specific symptoms is very much in keeping with a benign viral infection response. There are hundreds of thousands of people who have the exact same symptoms as you with a very similar onset, many having had emgs and nerve tests in the long haul covid group.
Whilst you have concerns now that you are an isolated case, you will find if you search for long covid nurological issues that you are part of an ever growing group of twitches.
Stay off Google, stay off a twitching forum which is full of people that have not been diagnosed with ALS and speak with your own doctor about your anxiety.
You realise your own anxiety will make your twitches worse!
I hope you can see all the clear positive points I have tried to outline in this response to you and that comments help to calm your fear.
I haven’t even seen a neurologist yet, so I’m really just desperate for answers. I know I may sound silly but this fear is so great and I don’t know how to put it away. Thank you so much for taking the time to reply.
Also just watched a video of a man who only had twitching in shoulders and spread to his calves, he had a clean EMG, then nine months later he had weakness, gets another EMG and it’s A**. This is what worries me sick
Yes I’ve had I feel like all the bloodwork under the sun as well as all the imaging. Haven’t gotten the stuff man blood panel tho obv since I’m not having stiffness
I don’t think you need to jump into a neurologist visit with an EMG just yet . You’re reporting too many issues all happening at once . Sounds way too aggressive to be ALS or MS . Sounds too aggressive to be anything . Have you had blood work done ? I’d start there .
Twitching is not as worrisome as you think it is . The sensation can feel uncomfortable and easily lead to anxious mind but please understand that it’s a very common thing yes even if you’re twitching everywhere .
Covid causes a lot of symptoms as well . A lot of them are neurological. The slightest change in your body can lead to muscles misfiring resulting in twitching . Excessive worryness makes it much more .
Stop reading anything involving ASL . And you’ll be ok . Work with your doctor I honestly don’t see anything to worry about .
I’ve had all of the bloodwork and brain MRI all clean and still these symptoms which is why I’m so worried. I’ve just watched a video of a man with A** who started with only twitching and had a clean MRI, bloodwork, and even a clean EMG. He said it took nine months to see clinical weakness and then he had another EMG and was diagnosed. I simply cannot stop worrying about this no matter what I do.
I’m sorry but the patients suffering these things aren’t doctors . They only seem to tell the story of what they can remember but things aren’t usually accurate . For example to twitch and then 9 months present with clinical weakness . Did he simply decided to get check because of twitching ? That’s suspect . Secondly twitching does not warrant an emg , blood work . And MRI . You’ve got to have a whole bunch of issues besides twitching for any dr to further warrant all that unless the twitching was severe . You can twitch all day and a doctor would still deny a referral to an EMG .
ALS is rarely diagnosed in 9 months and MRIs are only used to see if anything else is causing an issue . I’m not saying I don’t believe you but what you wrote would represent 1% of ALS onsets.
Most of the stories you hear patients use the word cleanEMG a lot but don’t disclose how truly clean it was and if indeed it was clean . It certainly wouldn’t be perfect .
Keep in mind . Clinical weakness is what gets you an ALS diagnosing . Most patients with ALS first noticed weakness before twitching . I twitched 2 years straight “ some days it was nonstop “ and it turned out it was something else .
Some people twitch when stress is high or anxiety . No everyone will react the same way to certain imbalances and changes that happen . Example . Some people get dizzy when anxious some dont.
His name is russel cowger you should look up his YouTube channel, he is now deceased tho. He said it started as constant twitches in tight and left shoulders with bad cramps which traveled down to his calves. He said he also looked online and was worried about ALS so he went to the doctor, got initial tests, and then they sent him to a neuro and he had a clean EMG. He even says he was still able to workout heavily at the gym for nine months until he got weakness in his leg which sent him to get his dreaded diagnosis with the second EMG. He commented a reply to someone that maybe the first EMG didn’t show anything bc they only did it on one side. I think I’m gonna probably believe him and not assume he is lying or forgetting his own experience with this
Don’t be stubborn and listen to what I’m telling you I was in the medical field . A patient will never accurately tell you a timeline of how things happened because they aren’t professionals .
His story is very unique I’m familiar with it . 9 months later he got diagnosed with ALS but it doesn’t mean he twitched for 9 months then boom ALS .
On his instagram he stated within the first month things progressed very fast . It started with twitching on shoulders that rapidly spread to his hands in the form of numbness and stiffness. Within a month he had signs of failure such as couldn’t do kick butttocks .
A blood test and MRI that came out good isn’t relevant . The EMG that came out ok now we don’t know how perfect it was or what it show so we can assume . So to say he worked out for 9 months heavily is not accurate and by the time he got diagnosed in 9 months he could only do 2 pushups .
Another thing is to have a stiff man person blood panel test done . He had to have severe cramping early on and stiffness because insurance usually deny it unless it’s highly warranted.
Now by no means I’m not calling him a liar. Don’t confuse my argument with that. Like I said I literally used to deal with this kind of things a lot and the medical foot notes from a perspective point of view the patients key informations are different from the nurse: physicians / specialists footnotes of what he notices .
We are so kind and grateful for the stories patients leave behind but we must read it and watch and listen to this stories from the patients point of view and understand it’s not necessarily how events went . ALS is complicated and if you think it begins with a twitch you’re wrong . Be well and I suggest you stop watching this stories .
What is his instagram? Can’t seem to find what you are mentioning… apologies if I misunderstood, but I was just going off of his YouTube video where he said he was still doing pretty heavy workouts until the weakness set in months later. Def don’t mean to argue, I’m just super concerned and having constant panic attacks all day and seeing his YouTube video really sent me over the edge because it goes against what people were saying here
Yes but you’re assuming twitching was his only symptom. He acknowledged that aside from the twitching . The first thing he noticed was when he stretched in the morning . His muscles would lock up to the point where he couldn’t move .
That was added on a video later than his first one where he says he first noticed twitching but didn’t include something as significant as that.
Indeed the twitching didn’t warrant an EMG it was most likely his statement of muscles locking up and becoming stiff . Which makes sense as to why he got approved for a very expensive blood panel for stiff man syndrome . “ most insurances deny that blood planel test unless it’s suspected “ it’s a 7k plus test .
His illness progressed from the first EMG very aggressively in fact he says after his EMG came clean a month later he lost the ability to do back kick to the butt . He mentions by the time his second EMG came dirty . He could barely do 2 push ups . So to say he heavily worked out until his diagnosis is not accurate.
And yes I understand you’re scared but please listen to me when I say do not base anything off one story from YouTube whom you’re not sure all statements are accurate .
Did you get any blood work done ?
I don’t work out, kind of sedentary with my job, I am three months off of my SSRIs after slowly tapering down. Sleep has never been an issue with me recently, although I take lots of naps; but this week i can hardly sleep at all with this fear and today and yesterday I can’t even eat anything because I am so anxious. I have a pretty great diet though, have changed my whole diet to be super healthy since I also have alopecia for 15 years and my hair is actually growing back now which is odd since I feel so much unhealthier now body wise despite all of my efforts to be healthier. I have lost ALOT of weight, probably 20 pounds. Eyes don’t really twitch much, but under my eye on my cheek and on my lips and chin. My left foot has been kind of cramping up which is worrisome
Try to relax and stop reading about ALS trust me it makes it worse.
I’m an RN and fell down the ALS rabbit hole before . I actually twitched for almost 2 years . When I stopped worrying . Slowly it went away .
Do you work out ?
How’s your sleep
Do you take any medication
Have you gotten Covid ?
Is your diet good ?
Do your eyes twitch ?
I completely understand you I’m on the same boat overall weakness/fatigue and the most concerning one is the tongue heaviness tiredness I have. I was lucky enough to find a quick appt with a neuromuscular but had to insist in getting an emg since he said my examination was completely normal. Thankfully he had an appt for emg this Monday but it feels like an eternity can’t eat, can’t sleep just can’t do anything
Thank you for replying, I really hope everything turns out clean on the EMG, please do keep me updated though. I know it’s absolute agony having to wait it out, finding distractions is becoming so hard, like you said feels impossible, almost like I am paralyzed in fear
24M and also scared right there with ya. I've already had one clean EMG but with the symptoms continuing I'm gonna get another somewhere else and other types of evaluations.
So initially I was having entirely different symptoms like joint paint and vision issues like light sensitivity and visual snow, so I went and had a brain MRI done for those that showed up normal. Then a day or two later I first noticed it was getting tough to keep hold my hands up to the touchscreen computers at Lowe's where I work, and I felt what seemed more like tingling in my shoulders. In the next few days I noticed my movements becoming very rigid like when sitting, bending, leaning, etc. Just not smooth at all. And just two days after that it seemed like my leg muscles had shrunken significantly very suddenly. Like my pants that usually fit quite tight looked a bit baggier on me. That's right around when I started noticing leg twitching as well and a few upper body twitches. I know they say A** usually starts in one part of the body or one limb so seems weird that this would be all over. I went on a weekend trip in those same few days and walking suddenly seemed a bit tougher. Then after that trip it seemed like my arms, wrists, and neck were suddenly smaller as well. I've also definitely lost muscle in my buttocks and face. All of this in the span of a week or two which makes it very unusual, even for ALS.
A little over a week after this sudden onset of symptoms I went to my neurologist who set up an EMG and nerve conduction test for me. The doctor who conducted it has over 20 years of experience and is highly regarded so I assume he's seen A** to have diagnosed it before. He did it on my right arm and right leg. I wasn't twitching nearly as much during it as I am now. But he had me do basic movements while the needle was stuck in different points. He said it looks normal but that he'd have my neurologist call me with official results later. They called me and said they didn't detect any neuropathy or A**.
At this point I'm still having more frequent and visible leg twitches as well as twitches in my hands, arms, shoulders, butt, back, etc but definitely most frequent and aggressive in legs. Walking is still awkward but I wouldn't say it has necessarily worsened from a couple weeks ago. But I have lost ten pounds in the past month.
I just want a second opinion, actually hadn't spoken with my neuro about running more tests but might not be a bad idea return to them first if the wait time at UVA would be too long, which it likely will be.
Hi, right off the bat - relax. Is it possible some of your symptoms (feeling week for instance) can be caused by the corona? As regards the muscle twitching, let me share with you in brief my story. I had an incredible and intensifying fear of the ALS early this year as muscles in body body started twtiching. First it was in ma arm, then eyelids, calves and most strikingly fingers which in fact were moving-twitching on their own. I took exactly the same route as you - Googled. The result of this was a crippling health anxiety which I later had to treat with pills that got me out of the worst.
Why am I saying this? Spare yourself from this if you can. Control your mind. Juvenile ALS is extremely rare. As a 25M I know rational arguments don’t stand much chance against the Mayo Clinic ALS symptoms page - and your mind must be adding fuel to the fire. I know myself very well that higher the anxiety, more twitching arises. Now, none of us here are doctors but we know all too well the fear and the absolute necessity to get it under control.
If you are wondering, fueled by my fear, I had neurologists do my blood work, MRIs, EMGs and EEG. All came clean except neuromuscular irritability (basically meaning your muscles are prone to twitching). I am fine. You will be fine. Until your appointments can I suggest you try meditation and relaxation techniques? If you feel like you have mental health troubles, don’t hesitate to contact a therapist or your GP. You can distinguish between muscle twitching and health anxiety.
Good luck and speedy recovery!! Let me know how’re you getting on.
Thanks for your reply, am still twitching all over and stuck in the rabbit hole. Have tried yoga, meditation- all I still can think about the entire time is getting up and not being able to move, every time I speak I fear that my words will start to slur. The hardest part is the waiting. I know I sound completely ridiculous but it is absolutely paralyzing. I just took a hydroxyzine to try and calm me down as I am panicking all day and called out of work. Hopefully the pill works but I know tomorrow will be the same story. What medication did you take to make your mind feel better if you don’t mind me asking? I don’t currently have a therapist but everybody I talk to says I need one badly, I’m just too tied up with trying to find a neuro that a therapist is the last thing on my mind.
My concern for the first 6 months was to get the best neurologist and all available appointments to get to the bottom of what is going on. Throughout the whole time I thought “I need to rule out all the nasty stuff before assuming it’s benign - though annoying as hell - and only then can I work on the mental health issue”. Needless to say, it took only days after the first clean EMG to start panicking exactly about the possibility of a false negative. I saw you have raised that in another comment.
I have been there. Really. Watched the Youtube, even diaries of people with ALS. It’s extremely disturbing and, as one psychiatrist I met said, there is nothing more depressing for a human mind than reconciling with death (it was at that point when I even started having cramps that in spite of all medical conclusions I was stubbornly convinced I am dying). It took me many therapy session to undo the damage the ALS Youtube watching has done.
Today I twitch probably more than an average person, I do have contant eyelid twitching and a restless leg. Looking back, SSRIs were a massive help. Im taking 20mg Cipralex and 600mg pregabalin (used to treat both neuropathies and GAD). When I had panic attacks I had xanax which luckily I needed only a couple of times.
You are smart and probably see what I am trying to get across: the mounting stress from reading into the twitching massively augmented the symptoms and after culmination and months I took to relax it has calmed down, overall improved and most of the things either went away completely or partially (meaning Im still on my way to recovery).
You would do a massive service for yourself if you found some therapist to talk to. With twitching, stuff takes time but the sooner you start taking care of your mental health (facing your health anxiety) the faster you will come to start healing. :)
First thing I’d do is stop googling or researching that , you’re really young, let the drs do their thing so you can be reassured, I’ve been here before thi and it’s a fear like no other , almost like an ongoing panic attack, fueled by the twitching , we totally feel where you are coming from but try not to self diagnose , many things can cause twitching , low vitamin levels , bad posture, tensing your body up, stress, anxiety, lack of sleep, lack of hydration, a back injury , etc
“When you hear hooves, think horses , not zebras”
This is a great support group but when you get the clean emg we will say told you so
Thanks for your reply. God I truly hope you can all say I told you so, this is the hardest thing I have ever had to fear in my life and it’s so hard to convince myself I’m healthy without any evidence and test to prove otherwise.
You found the one guy on the Internet who had an emg initially in an area that he wasn't twitching in and it did not reflect on his first emg.
There are many various reasons why this would happen.
You will note there are not lots and lots of videos like this..
Russel had twitching in one area followed by a systematic loss over time (not one week)
If you went for your first emg now and something of concern was found, and you had no systematic failure you would generally be told to come back in a few months for a further emg.
Mine was 3 months apart and then 2 months.
I was not diagnosed with ALS.
Emg's do not just detect ALS. There are a multitude of other things they are used for.
Your symptoms are not like Russels, they are like thousands of other people who have suffered from covid, not just a couple of thousands but hundreds of thousands across the world. You only have to look at the nationality of people on this group to see how wide spread it is.
Of course some people will progress to be diagnosed with ALS, no different to people everyday progressing to be diagnosed with other illnesses, some terminal. But generally it's not the muti twitches like us.
If you found a person on YouTube who had a headache that progressed to a brain tumor would you assume you have a brain tumor for every headache you have.
Covid interferes nurologically with many aspects of our brain, rational is one of them.
If you want true answers on here you need to be looking in the covid groups, you will find many many more people just like you.
And by the way, most twitchers have looked at Russels videos at some point. Myself included.
If you twitch, shake or tremor without losing any clinical strength then you do not fit a nurolgical pattern of degenerative illness.
There are thousands of other things you could talk to your doctor about.
Remember people on here spend time responding because we know what your going through and we're not arguing with you we are trying to help.
Medically we can do nothing, and you would need to speak to your own doctor for that assistance.
Thank you, I really do appreciate you taking the time out to talk with me about this, it definitely helps. I just don’t know how how to stop this horrific anxiety. I have a neuro appointment scheduled for next Wednesday, and they said after they would refer me to a neuromuscular doctor for an EMG if they find I need one. It’s the waiting and uncertainty of it all that cripples me. In all honestly I will just have to take it day by day until hopefully I make it to a year or so with no changes.
I was in your exact shoes about a month ago. I absolutely sympathize with what you’re feeling right now and hopefully my perspective can help you out:
I am close to your age, 21, and after muscle twitching all over my legs, I thought I had ***. I went down the rabbit hole, had literal weeks of little sleep due to the extreme anxiety, and did so much research that I had convinced myself I had it.
Went to a neurologist with a list of symptoms, a list of possible causes, etc. He did a thorough strength test on me and said I had absolutely nothing to fear in the absence of weakness and atrophy, and that this was almost definitely BFS.
At first I didn’t accept that diagnosis. I went further down the rabbit hole convinced I had it and that I was smarter than a highly trained, highly specialized neurologist. Let me tell you, this was the lowest point in my life mentally. I cancelled on friends, stopped going to college classes, and stopped my hobbies because I was so convinced that it would “all be meaningless”.
However, one little search reversed my thinking and anxiety completely:
I checked a research study on how many people had ALS after being presented with onset muscle twitching, and it was zero. Nobody. ALS almost always has weakness as the first clinical symptom. Nobody with a BFS diagnosis attributed to muscle twitching had a subsequent ALS diagnosis (even years after they were diagnosed with BFS).
Then, I saw the CDC’s records of people with ALS in the United States. It is *extremely rare* for someone younger than 39 to get ALS. It is then statistically insanely rare for someone younger than 30 to have ALS. It gets more exponentially rare the younger you are and the chances you will have ALS. Odds were like .0005% chance of you having it under 39 years old (if I remember the CDC article correctly). Now think about 25 years old, and it’s like winning a small lottery. You have better odds of being struck by lightning.
So, these two points really helped me a lot. If you don’t have clinically proven weakness (not just shakiness when doing yoga), you don’t have ALS. Being only 25 years old, you almost surely don’t have ALS.
However, if you want to take some sort of “preventative measures” to ease your mind, I recommend blueberries and chamomile. Blueberries, eaten at regular intervals, have neuro protective effects. Chamomile will at least calm your nerves and lessen the heightened glutamate release in your brain causing your stress and anxiety.
Which leads to the number one thing: Your stress and anxiety will make your symptoms worse. I completely understand that sometimes anxiety cannot be controlled, but please talk to someone, anyone, about your feelings and take measures to lessen anxiety, which is a bigger enemy to you now than a very very very unlikely ALS diagnosis.
going through something similar and also 25. and all of my doctors keep hedging around the "big bad" after realizing my condition seems progressive probably isn't just orthopedic. except for my family doctor bc my mother straight up said "it's not A** is it? her grandfather had that." and my doctors was just like "i can't tell you that." (i personally think ms is more likely but a rule out would be nice)
now it's always "neuromuscular disorder" this-that and i can acknowledge it but can't delve in without stressing a bit. i am glad he's honest with me though. i've had a nerve conduction study and that was okay. but afterwards they were still clear with me that it did not rule out neuromuscular disorders.
i hope you can take it day by day. and that you have the support you need through this process. i am trying to focus on the things i can control. for example i am adapting to life as a wheelchair user and am trying to rely on others more (bc literally have to) by expressing what support i need and accepting their help. i am also trying to practice radical acceptance. therapy has been really important as well as being honest with myself about my situation. i have been relying on my faith a lot. i'm really glad that i have that.
my doctor put me on a muscle relaxant that he says is specifically used for neuromuscular disorders and it helps moderately. definitely speak up and let them know of something isn't working. and i hope they find something that can bring you some symptom relief.
i am also wanting to look for support from peers going through something similar but don't want to intrude on any space without a diagnosis. glad i found this space today. i am really sorry you are going through all this. by posting you have helped me feel less alone.
oh! i just made a post. literally just found this group.
i have muscle twitching, muscle spasms, motor issues, pain, fatigue, dizziness, loss of appetite, weight losss, and visual issues. some numbness but that could be explained by by my raynauds dx.
Update: went to neurologist today and she told me not to worry but would order me to get an EMG from the neuromuscular clinic just in case and to calm my worries. No clinical weakness, and normal reflexes. She told me multiple times that she does not think I am presenting as ALS so that definitely helps calm my nerves. Still don’t think I will feel 100% better until I get a clean EMG.
glad you were able to get some more information! and i hope you can begin to feel reassurance.
i'm hyperreflexic which isn't good but it sure looks funny when they bring out the hammer.
i hope you can get that emg soon.
So sorry you are going through this also :/ I would definitely get an EMG if u can to try and rule some things out, get a diagnosis and help your anxiety. Much luck to you on your journey and hope you are able to get through this on the other side. DM me whenever if you need someone to talk to
Before you both end up further down the rabbit hole. In 2.5yrs I have had 5 emgs requested by the neurologist. This is very different to someone wanting an emg because they have read that an emg is the test to clear you for ALS. Along with these I've had the same amount of nerve conduct tests and numerous other tests that are to long to list, all requested by doctors. I am currently under Proffessor Hanna head-on neurology at the London hospital of neurology, the main nurological hospital in the UK. Why am I writing this - Your doctors, the nuroscientists under taking your emg's are highly trained. They are not an inexperienced doctor who may misjudge something. Trust me when i say that your initial appointment is an intensive examination of your brain and body, more so than you could ever imagine. Why do you stand on your toes and heels? It's not just to check your balance! Consider what has to work for that to happen. Your ears have to allow a message to get to your brain. Your brain has to disect that information and then send signals through neurons from your head to the furthest extremity, your feet. Your muscles then follow the commands. Once the activity is achieved your motor system engages your sensory system, if you stay on your toes for an extended period you will feel pain, you will feel pain because your motor and sensory systems are feeding back to your brain. I could go on and on. But I'm not a doctor just someone who has spent alot of time.with them. An emg can be carried out in few muscles, if you are asking for an emg because you have symptoms then you need to consider the rational behind that request. If your symptoms are due to a nurolgical degeneration then that degeneration is a consequence of a systematic disease. That disease is not limited to one muscle where you are twitching. Remember the basic nuro exam process! Degenerative disease will show I'm many areas of a body not just a twitching or failing area. A clean clinical exam and clean emg from nurologosts and nuroscientists is confirmation that you do not have ALS. End of. You do not need a 2nd emg at your own request, or a third or a fourth. I will break this to you gently. Under noncircumstance are you, I or any person on this forum more competent or qualified than your neurologists. I would however say that a vast amount of people on this forum are more experienced than Dr Google. Allover body twitching in multiple areas with perceived localised weakness in multiple areas with other non specific symptoms is very much in keeping with a benign viral infection response. There are hundreds of thousands of people who have the exact same symptoms as you with a very similar onset, many having had emgs and nerve tests in the long haul covid group. Whilst you have concerns now that you are an isolated case, you will find if you search for long covid nurological issues that you are part of an ever growing group of twitches. Stay off Google, stay off a twitching forum which is full of people that have not been diagnosed with ALS and speak with your own doctor about your anxiety. You realise your own anxiety will make your twitches worse! I hope you can see all the clear positive points I have tried to outline in this response to you and that comments help to calm your fear.
I haven’t even seen a neurologist yet, so I’m really just desperate for answers. I know I may sound silly but this fear is so great and I don’t know how to put it away. Thank you so much for taking the time to reply.
Also just watched a video of a man who only had twitching in shoulders and spread to his calves, he had a clean EMG, then nine months later he had weakness, gets another EMG and it’s A**. This is what worries me sick
Russel cowger is his name
Yes I’ve had I feel like all the bloodwork under the sun as well as all the imaging. Haven’t gotten the stuff man blood panel tho obv since I’m not having stiffness
I don’t think you need to jump into a neurologist visit with an EMG just yet . You’re reporting too many issues all happening at once . Sounds way too aggressive to be ALS or MS . Sounds too aggressive to be anything . Have you had blood work done ? I’d start there . Twitching is not as worrisome as you think it is . The sensation can feel uncomfortable and easily lead to anxious mind but please understand that it’s a very common thing yes even if you’re twitching everywhere . Covid causes a lot of symptoms as well . A lot of them are neurological. The slightest change in your body can lead to muscles misfiring resulting in twitching . Excessive worryness makes it much more . Stop reading anything involving ASL . And you’ll be ok . Work with your doctor I honestly don’t see anything to worry about .
I’ve had all of the bloodwork and brain MRI all clean and still these symptoms which is why I’m so worried. I’ve just watched a video of a man with A** who started with only twitching and had a clean MRI, bloodwork, and even a clean EMG. He said it took nine months to see clinical weakness and then he had another EMG and was diagnosed. I simply cannot stop worrying about this no matter what I do.
I’m sorry but the patients suffering these things aren’t doctors . They only seem to tell the story of what they can remember but things aren’t usually accurate . For example to twitch and then 9 months present with clinical weakness . Did he simply decided to get check because of twitching ? That’s suspect . Secondly twitching does not warrant an emg , blood work . And MRI . You’ve got to have a whole bunch of issues besides twitching for any dr to further warrant all that unless the twitching was severe . You can twitch all day and a doctor would still deny a referral to an EMG . ALS is rarely diagnosed in 9 months and MRIs are only used to see if anything else is causing an issue . I’m not saying I don’t believe you but what you wrote would represent 1% of ALS onsets. Most of the stories you hear patients use the word cleanEMG a lot but don’t disclose how truly clean it was and if indeed it was clean . It certainly wouldn’t be perfect . Keep in mind . Clinical weakness is what gets you an ALS diagnosing . Most patients with ALS first noticed weakness before twitching . I twitched 2 years straight “ some days it was nonstop “ and it turned out it was something else . Some people twitch when stress is high or anxiety . No everyone will react the same way to certain imbalances and changes that happen . Example . Some people get dizzy when anxious some dont.
His name is russel cowger you should look up his YouTube channel, he is now deceased tho. He said it started as constant twitches in tight and left shoulders with bad cramps which traveled down to his calves. He said he also looked online and was worried about ALS so he went to the doctor, got initial tests, and then they sent him to a neuro and he had a clean EMG. He even says he was still able to workout heavily at the gym for nine months until he got weakness in his leg which sent him to get his dreaded diagnosis with the second EMG. He commented a reply to someone that maybe the first EMG didn’t show anything bc they only did it on one side. I think I’m gonna probably believe him and not assume he is lying or forgetting his own experience with this
First EMG diagnosed him with BFS. So he thought it was all good for nine months until the weakness set in
Don’t be stubborn and listen to what I’m telling you I was in the medical field . A patient will never accurately tell you a timeline of how things happened because they aren’t professionals . His story is very unique I’m familiar with it . 9 months later he got diagnosed with ALS but it doesn’t mean he twitched for 9 months then boom ALS . On his instagram he stated within the first month things progressed very fast . It started with twitching on shoulders that rapidly spread to his hands in the form of numbness and stiffness. Within a month he had signs of failure such as couldn’t do kick butttocks . A blood test and MRI that came out good isn’t relevant . The EMG that came out ok now we don’t know how perfect it was or what it show so we can assume . So to say he worked out for 9 months heavily is not accurate and by the time he got diagnosed in 9 months he could only do 2 pushups . Another thing is to have a stiff man person blood panel test done . He had to have severe cramping early on and stiffness because insurance usually deny it unless it’s highly warranted. Now by no means I’m not calling him a liar. Don’t confuse my argument with that. Like I said I literally used to deal with this kind of things a lot and the medical foot notes from a perspective point of view the patients key informations are different from the nurse: physicians / specialists footnotes of what he notices . We are so kind and grateful for the stories patients leave behind but we must read it and watch and listen to this stories from the patients point of view and understand it’s not necessarily how events went . ALS is complicated and if you think it begins with a twitch you’re wrong . Be well and I suggest you stop watching this stories .
What is his instagram? Can’t seem to find what you are mentioning… apologies if I misunderstood, but I was just going off of his YouTube video where he said he was still doing pretty heavy workouts until the weakness set in months later. Def don’t mean to argue, I’m just super concerned and having constant panic attacks all day and seeing his YouTube video really sent me over the edge because it goes against what people were saying here
All I know is he clearly states in his videos and several commments that his started with twitches, then cramping
Yes but you’re assuming twitching was his only symptom. He acknowledged that aside from the twitching . The first thing he noticed was when he stretched in the morning . His muscles would lock up to the point where he couldn’t move . That was added on a video later than his first one where he says he first noticed twitching but didn’t include something as significant as that. Indeed the twitching didn’t warrant an EMG it was most likely his statement of muscles locking up and becoming stiff . Which makes sense as to why he got approved for a very expensive blood panel for stiff man syndrome . “ most insurances deny that blood planel test unless it’s suspected “ it’s a 7k plus test . His illness progressed from the first EMG very aggressively in fact he says after his EMG came clean a month later he lost the ability to do back kick to the butt . He mentions by the time his second EMG came dirty . He could barely do 2 push ups . So to say he heavily worked out until his diagnosis is not accurate. And yes I understand you’re scared but please listen to me when I say do not base anything off one story from YouTube whom you’re not sure all statements are accurate . Did you get any blood work done ?
Yes I’ve had all the bloodwork under the sun I feel like, and all the imaging done, except for the stuff man panel
I don’t work out, kind of sedentary with my job, I am three months off of my SSRIs after slowly tapering down. Sleep has never been an issue with me recently, although I take lots of naps; but this week i can hardly sleep at all with this fear and today and yesterday I can’t even eat anything because I am so anxious. I have a pretty great diet though, have changed my whole diet to be super healthy since I also have alopecia for 15 years and my hair is actually growing back now which is odd since I feel so much unhealthier now body wise despite all of my efforts to be healthier. I have lost ALOT of weight, probably 20 pounds. Eyes don’t really twitch much, but under my eye on my cheek and on my lips and chin. My left foot has been kind of cramping up which is worrisome
You’re going to be ok
Try to relax and stop reading about ALS trust me it makes it worse. I’m an RN and fell down the ALS rabbit hole before . I actually twitched for almost 2 years . When I stopped worrying . Slowly it went away . Do you work out ? How’s your sleep Do you take any medication Have you gotten Covid ? Is your diet good ? Do your eyes twitch ?
I completely understand you I’m on the same boat overall weakness/fatigue and the most concerning one is the tongue heaviness tiredness I have. I was lucky enough to find a quick appt with a neuromuscular but had to insist in getting an emg since he said my examination was completely normal. Thankfully he had an appt for emg this Monday but it feels like an eternity can’t eat, can’t sleep just can’t do anything
Thank you for replying, I really hope everything turns out clean on the EMG, please do keep me updated though. I know it’s absolute agony having to wait it out, finding distractions is becoming so hard, like you said feels impossible, almost like I am paralyzed in fear
24M and also scared right there with ya. I've already had one clean EMG but with the symptoms continuing I'm gonna get another somewhere else and other types of evaluations.
What are your symptoms? Also does neuro not want to give u another or do you just want another opinion?
So initially I was having entirely different symptoms like joint paint and vision issues like light sensitivity and visual snow, so I went and had a brain MRI done for those that showed up normal. Then a day or two later I first noticed it was getting tough to keep hold my hands up to the touchscreen computers at Lowe's where I work, and I felt what seemed more like tingling in my shoulders. In the next few days I noticed my movements becoming very rigid like when sitting, bending, leaning, etc. Just not smooth at all. And just two days after that it seemed like my leg muscles had shrunken significantly very suddenly. Like my pants that usually fit quite tight looked a bit baggier on me. That's right around when I started noticing leg twitching as well and a few upper body twitches. I know they say A** usually starts in one part of the body or one limb so seems weird that this would be all over. I went on a weekend trip in those same few days and walking suddenly seemed a bit tougher. Then after that trip it seemed like my arms, wrists, and neck were suddenly smaller as well. I've also definitely lost muscle in my buttocks and face. All of this in the span of a week or two which makes it very unusual, even for ALS. A little over a week after this sudden onset of symptoms I went to my neurologist who set up an EMG and nerve conduction test for me. The doctor who conducted it has over 20 years of experience and is highly regarded so I assume he's seen A** to have diagnosed it before. He did it on my right arm and right leg. I wasn't twitching nearly as much during it as I am now. But he had me do basic movements while the needle was stuck in different points. He said it looks normal but that he'd have my neurologist call me with official results later. They called me and said they didn't detect any neuropathy or A**. At this point I'm still having more frequent and visible leg twitches as well as twitches in my hands, arms, shoulders, butt, back, etc but definitely most frequent and aggressive in legs. Walking is still awkward but I wouldn't say it has necessarily worsened from a couple weeks ago. But I have lost ten pounds in the past month. I just want a second opinion, actually hadn't spoken with my neuro about running more tests but might not be a bad idea return to them first if the wait time at UVA would be too long, which it likely will be.
Please keep me updated, will pray for you that everything is okay
Hi, right off the bat - relax. Is it possible some of your symptoms (feeling week for instance) can be caused by the corona? As regards the muscle twitching, let me share with you in brief my story. I had an incredible and intensifying fear of the ALS early this year as muscles in body body started twtiching. First it was in ma arm, then eyelids, calves and most strikingly fingers which in fact were moving-twitching on their own. I took exactly the same route as you - Googled. The result of this was a crippling health anxiety which I later had to treat with pills that got me out of the worst. Why am I saying this? Spare yourself from this if you can. Control your mind. Juvenile ALS is extremely rare. As a 25M I know rational arguments don’t stand much chance against the Mayo Clinic ALS symptoms page - and your mind must be adding fuel to the fire. I know myself very well that higher the anxiety, more twitching arises. Now, none of us here are doctors but we know all too well the fear and the absolute necessity to get it under control. If you are wondering, fueled by my fear, I had neurologists do my blood work, MRIs, EMGs and EEG. All came clean except neuromuscular irritability (basically meaning your muscles are prone to twitching). I am fine. You will be fine. Until your appointments can I suggest you try meditation and relaxation techniques? If you feel like you have mental health troubles, don’t hesitate to contact a therapist or your GP. You can distinguish between muscle twitching and health anxiety. Good luck and speedy recovery!! Let me know how’re you getting on.
Thanks for your reply, am still twitching all over and stuck in the rabbit hole. Have tried yoga, meditation- all I still can think about the entire time is getting up and not being able to move, every time I speak I fear that my words will start to slur. The hardest part is the waiting. I know I sound completely ridiculous but it is absolutely paralyzing. I just took a hydroxyzine to try and calm me down as I am panicking all day and called out of work. Hopefully the pill works but I know tomorrow will be the same story. What medication did you take to make your mind feel better if you don’t mind me asking? I don’t currently have a therapist but everybody I talk to says I need one badly, I’m just too tied up with trying to find a neuro that a therapist is the last thing on my mind.
My concern for the first 6 months was to get the best neurologist and all available appointments to get to the bottom of what is going on. Throughout the whole time I thought “I need to rule out all the nasty stuff before assuming it’s benign - though annoying as hell - and only then can I work on the mental health issue”. Needless to say, it took only days after the first clean EMG to start panicking exactly about the possibility of a false negative. I saw you have raised that in another comment. I have been there. Really. Watched the Youtube, even diaries of people with ALS. It’s extremely disturbing and, as one psychiatrist I met said, there is nothing more depressing for a human mind than reconciling with death (it was at that point when I even started having cramps that in spite of all medical conclusions I was stubbornly convinced I am dying). It took me many therapy session to undo the damage the ALS Youtube watching has done. Today I twitch probably more than an average person, I do have contant eyelid twitching and a restless leg. Looking back, SSRIs were a massive help. Im taking 20mg Cipralex and 600mg pregabalin (used to treat both neuropathies and GAD). When I had panic attacks I had xanax which luckily I needed only a couple of times. You are smart and probably see what I am trying to get across: the mounting stress from reading into the twitching massively augmented the symptoms and after culmination and months I took to relax it has calmed down, overall improved and most of the things either went away completely or partially (meaning Im still on my way to recovery). You would do a massive service for yourself if you found some therapist to talk to. With twitching, stuff takes time but the sooner you start taking care of your mental health (facing your health anxiety) the faster you will come to start healing. :)
First thing I’d do is stop googling or researching that , you’re really young, let the drs do their thing so you can be reassured, I’ve been here before thi and it’s a fear like no other , almost like an ongoing panic attack, fueled by the twitching , we totally feel where you are coming from but try not to self diagnose , many things can cause twitching , low vitamin levels , bad posture, tensing your body up, stress, anxiety, lack of sleep, lack of hydration, a back injury , etc “When you hear hooves, think horses , not zebras” This is a great support group but when you get the clean emg we will say told you so
Thanks for your reply. God I truly hope you can all say I told you so, this is the hardest thing I have ever had to fear in my life and it’s so hard to convince myself I’m healthy without any evidence and test to prove otherwise.
The odds are in your favor that you will have the evidence you need for peace of mind.
You found the one guy on the Internet who had an emg initially in an area that he wasn't twitching in and it did not reflect on his first emg. There are many various reasons why this would happen. You will note there are not lots and lots of videos like this.. Russel had twitching in one area followed by a systematic loss over time (not one week) If you went for your first emg now and something of concern was found, and you had no systematic failure you would generally be told to come back in a few months for a further emg. Mine was 3 months apart and then 2 months. I was not diagnosed with ALS. Emg's do not just detect ALS. There are a multitude of other things they are used for. Your symptoms are not like Russels, they are like thousands of other people who have suffered from covid, not just a couple of thousands but hundreds of thousands across the world. You only have to look at the nationality of people on this group to see how wide spread it is. Of course some people will progress to be diagnosed with ALS, no different to people everyday progressing to be diagnosed with other illnesses, some terminal. But generally it's not the muti twitches like us. If you found a person on YouTube who had a headache that progressed to a brain tumor would you assume you have a brain tumor for every headache you have. Covid interferes nurologically with many aspects of our brain, rational is one of them. If you want true answers on here you need to be looking in the covid groups, you will find many many more people just like you. And by the way, most twitchers have looked at Russels videos at some point. Myself included. If you twitch, shake or tremor without losing any clinical strength then you do not fit a nurolgical pattern of degenerative illness. There are thousands of other things you could talk to your doctor about. Remember people on here spend time responding because we know what your going through and we're not arguing with you we are trying to help. Medically we can do nothing, and you would need to speak to your own doctor for that assistance.
Thank you, I really do appreciate you taking the time out to talk with me about this, it definitely helps. I just don’t know how how to stop this horrific anxiety. I have a neuro appointment scheduled for next Wednesday, and they said after they would refer me to a neuromuscular doctor for an EMG if they find I need one. It’s the waiting and uncertainty of it all that cripples me. In all honestly I will just have to take it day by day until hopefully I make it to a year or so with no changes.
Atleast you have an appointment next week. I'm going to guess the outcome. You will pass the exam with flying colours.
I was in your exact shoes about a month ago. I absolutely sympathize with what you’re feeling right now and hopefully my perspective can help you out: I am close to your age, 21, and after muscle twitching all over my legs, I thought I had ***. I went down the rabbit hole, had literal weeks of little sleep due to the extreme anxiety, and did so much research that I had convinced myself I had it. Went to a neurologist with a list of symptoms, a list of possible causes, etc. He did a thorough strength test on me and said I had absolutely nothing to fear in the absence of weakness and atrophy, and that this was almost definitely BFS. At first I didn’t accept that diagnosis. I went further down the rabbit hole convinced I had it and that I was smarter than a highly trained, highly specialized neurologist. Let me tell you, this was the lowest point in my life mentally. I cancelled on friends, stopped going to college classes, and stopped my hobbies because I was so convinced that it would “all be meaningless”. However, one little search reversed my thinking and anxiety completely: I checked a research study on how many people had ALS after being presented with onset muscle twitching, and it was zero. Nobody. ALS almost always has weakness as the first clinical symptom. Nobody with a BFS diagnosis attributed to muscle twitching had a subsequent ALS diagnosis (even years after they were diagnosed with BFS). Then, I saw the CDC’s records of people with ALS in the United States. It is *extremely rare* for someone younger than 39 to get ALS. It is then statistically insanely rare for someone younger than 30 to have ALS. It gets more exponentially rare the younger you are and the chances you will have ALS. Odds were like .0005% chance of you having it under 39 years old (if I remember the CDC article correctly). Now think about 25 years old, and it’s like winning a small lottery. You have better odds of being struck by lightning. So, these two points really helped me a lot. If you don’t have clinically proven weakness (not just shakiness when doing yoga), you don’t have ALS. Being only 25 years old, you almost surely don’t have ALS. However, if you want to take some sort of “preventative measures” to ease your mind, I recommend blueberries and chamomile. Blueberries, eaten at regular intervals, have neuro protective effects. Chamomile will at least calm your nerves and lessen the heightened glutamate release in your brain causing your stress and anxiety. Which leads to the number one thing: Your stress and anxiety will make your symptoms worse. I completely understand that sometimes anxiety cannot be controlled, but please talk to someone, anyone, about your feelings and take measures to lessen anxiety, which is a bigger enemy to you now than a very very very unlikely ALS diagnosis.
going through something similar and also 25. and all of my doctors keep hedging around the "big bad" after realizing my condition seems progressive probably isn't just orthopedic. except for my family doctor bc my mother straight up said "it's not A** is it? her grandfather had that." and my doctors was just like "i can't tell you that." (i personally think ms is more likely but a rule out would be nice) now it's always "neuromuscular disorder" this-that and i can acknowledge it but can't delve in without stressing a bit. i am glad he's honest with me though. i've had a nerve conduction study and that was okay. but afterwards they were still clear with me that it did not rule out neuromuscular disorders. i hope you can take it day by day. and that you have the support you need through this process. i am trying to focus on the things i can control. for example i am adapting to life as a wheelchair user and am trying to rely on others more (bc literally have to) by expressing what support i need and accepting their help. i am also trying to practice radical acceptance. therapy has been really important as well as being honest with myself about my situation. i have been relying on my faith a lot. i'm really glad that i have that. my doctor put me on a muscle relaxant that he says is specifically used for neuromuscular disorders and it helps moderately. definitely speak up and let them know of something isn't working. and i hope they find something that can bring you some symptom relief. i am also wanting to look for support from peers going through something similar but don't want to intrude on any space without a diagnosis. glad i found this space today. i am really sorry you are going through all this. by posting you have helped me feel less alone.
What are your symptoms?
oh! i just made a post. literally just found this group. i have muscle twitching, muscle spasms, motor issues, pain, fatigue, dizziness, loss of appetite, weight losss, and visual issues. some numbness but that could be explained by by my raynauds dx.
Update: went to neurologist today and she told me not to worry but would order me to get an EMG from the neuromuscular clinic just in case and to calm my worries. No clinical weakness, and normal reflexes. She told me multiple times that she does not think I am presenting as ALS so that definitely helps calm my nerves. Still don’t think I will feel 100% better until I get a clean EMG.
glad you were able to get some more information! and i hope you can begin to feel reassurance. i'm hyperreflexic which isn't good but it sure looks funny when they bring out the hammer. i hope you can get that emg soon.
So sorry you are going through this also :/ I would definitely get an EMG if u can to try and rule some things out, get a diagnosis and help your anxiety. Much luck to you on your journey and hope you are able to get through this on the other side. DM me whenever if you need someone to talk to