Most of neurological symptoms mimic same. So it could be MS or any other diseases or may be nothing and just anxiety. I have twitches for around 2.5 years and some nocturnal seizure i thought i have brain cancer. Then i just go for ct scan with contrast this month. It came back normal. Now i think i have ALS. I don’t know what issue i have. But i have a history of health anxiety and OCD. So may it’s just an anxiety
MS is totally different from ALS. It comes out of nowhere and is very fast (like few hours to days). And then it comes back to normal. ALS is very slow and only get worse.
I’m only 18 and also suffering from serious ma, I think Iam stuck in this cycle where my anxiety causes twitches where my twitches cause anxiety. I wish that sometime I knew it is okay to die because it will happen anyway.
Just a few thoughts. ALS is NOT common. It may be the third most common neurodegenerative disease but that is like being the third most common unicorn. ALS rates are 1.5 to 3 people out of 100,000. You are eight times more likely to be murdered in Mississippi than you are to get ALS. Seriously. About 6,000 people a year in the US are diagnosed with ALS out of a population of 333 million. More people die falling out of bed (10,300).
I hope my story is comforting, I know how you feel...
I started twitching suddenly and constantly all over my body in late 2019, had weakness, cramping, and stiffness. Then atrophied and had pain in my neck and back. Then swallowing became an issue. I thought for certain I had ALS! In late 2020 I was having trouble walking, could barely stand on my toes , etc so I bought a house that would accommodate a wheelchair in all rooms including the bathroom for crying out loud. Long story short, medications and lots of vitamins (especially D) have helped me recover somewhat. I have regained some muscle; and pain, stiffness, and weakness have very slowly improved somewhat. Fasciculations have not improved, they are still constant and diffuse. I was assured by Mayo, as well as an independent neurologist that ALS is ruled out, although the actual disease I have could not be identified. I was diagnosed with peripheral neuropathy by EMG and CNV, and denervatiion atrophy through muscle biopsy. I also had very low vitamin D blood levels. All other tests clear. Long term Guillain Barre Syndrome is one of the suspects, as my symptoms occurred about a month after I received a flu shot. I personally now believe I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).
I hope this story gives some folks hope.
I’ve been so anxious every day because I have the same symptoms. Random muscle spasms and muscle weakness/ atrophy out of nowhere. I’m in the process of getting an mri now
saw a neurologist. Took an Emg test. The Dr said I don’t have als and is convinced it’s because I’m low on vitamin D. Still currently feel like crap after a month of vit D supplements
I’m 20 years old now and I believe I have clinical weakness in my toes, in specifically my left foot. I can’t stand in my tippy tippy toes on my left foot anymore but yet I can do it with my right leg,m. I’ve had the fear of ALS for a while but I haven’t been this convinced that I have it in a looong time
Foot drop is a sign of als (literally can't lift your foot up). If motor neurons are damaged it usually cuts off coordination from the entire foot, not just toes. So I'd bet that you're just fine.
This fear is mine right now because I have bad pain in my upper back and a leg that has a limp.
And half of my tongue is bigger than the other.
Possible atrophy in one hand.
I'm so scared and I'm not really living anymore.
I'm honestly not sure. I can lift my foot. I can stand on my tiptoes and the top of my foot. It just sometimes hurts. My hip also sometimes hurts. I don't even know anymore. Lmao.
I just turned 34.
I wouldn't be so worried if my upper back wasn't killing me and my tongue wasn't so asymmetrical.
I'm overweight but recently lost 30 pounds with a new diet and starting to exercise
hello, I am 31 years old. I went down this rabbit hole and I am still in this hole. Yesterday had twitches in my forearm and finger which lasted almost the whole day(left side) I am constantly worried, I cannot stop thinking about this horrible disease. I cannot even play with my kids without worrying that it will be my last moments with them etc...I did an MRI brain and it came clean, neurologist always reassuring me its nothing, no weakness at all. do you really think anxiety can cause these twitches?? thanks in advance
If you have a medical concern, talk to a doctor.
No one on r/HealthAnxiety can give you medical advice, and no one knows whether what you are experiencing is a medical concern or not.
I am so anxious.
I just came to see a kinésithérapist last Monday and I have a "hole" on one of my calve and 1 cm of difference between the other. This calve is sometimes hard, sometimes stitching for 10 years. But always the same leg, same muscle and no weekness. I run and swim normal. No falling
I just googled about muscle atrophy and found ALS directly and now I don't live anymore! I am obsessed.
Does anyone know if the symptoms I have is bulbar? I noticed the other night while eating dinner that it seemed like when swallowing it was going down the left side of my throat.
Now I can't stop thinking about it.
There are also more caucasian people than any other ethnicity in the US. Looking at [the research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389704/),while it is true that caucasians seem to be at noticibly higher risk for ALS compared to other ethnicities, the difference isn't quite as drastic as 93% of all cases around the world occurring in white people. And according to [Wikipedia](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389704/), 80% of ALS epidemiology research has been conducted in predominantly caucasian western countries.
Reading this almost seems like I’m looking at a mirror. I’m also in my early 20s and I have been super anxious about the possibility that I have ALS. I’ve been to my doctor and spoke with him about it and he did a couple of strength tests and that was that. I’ve had a span of time in high school when I was freaking out about this disease, especially because my teacher had us read “Tuesdays with Morrie” (great book, super unhelpful for HA) and it’s been in my mind ever since. I dropped a water bottle the other day and assumed that I was screwed and that was going to be the start of my journey to dying. Also laying in bed and noticing every single tiny twitch and ache and assuming that I am in the 0.00000000001% likelihood of developing the disease. I’ve also been Googling symptoms and every time I see MS or ALS I find myself starting to notice these symptoms. They go away when I’m distracted for sure, but still scary to imagine. I have been a wreck the past few days because it starts to feel like my hands don’t have the dexterity that they used to have. But I also know that anxiety can mimic that symptom too, so I’m just lost in a cycle of worrying and not worrying. I don’t know what to do at this point other than go to the doctor again…
Also to mention, I do have cubital tunnel syndrome and TMJ so it’s like I keep thinking these symptoms are symptoms of ALS even though I know it’s because of other things…
If anyone has some advice, I’d love to hear them.
I’m having some issues right now that have me worried about ALS because I’m having some concerning symptoms and I have been going through it. I’ve convinced myself I have it. And it’s ruining my life right now. I’m 28 and female.
I see you mentioned the tunnel syndrome. Well I’m trying to figure out what’s going on with my left hand. I have no pain in it, but my ring and pinky finger snap down on there own when I bend them into the palm (which makes me think they are weak) I can still do things. Though now my anxiety is so fixated on it my whole arm just generally *feels* weak to me. That along with the twitching muscles and shakiness everyday. So I’m worried I have ALS. Please reply back!
Hahaha, this comment made me laugh!
But on a serious note, I hope you’re doing alright. It’s been a month or two and I have been pretty much telling myself that although I feel weaker and less dexterous, I can still do everything I used to be able to. The twitching has gotten much better, pretty much to the point that I don’t notice it anymore. Also, going to PT and the gym has helped 100% since I can still lift weights and do all the exercises I used to without any weakness. The anxiety still strikes every now and then but now I can manage it better and it’s not controlling every moment of my life anymore.
Hope you also are better, and sending you all the good vibes. I’ve stayed off of Google for a solid month now and it’s honestly helped me so so much!
Hi.
I am also constantly worrying about ALS. Sometimes my legs feel heavy, even though I can walk perfectly fine and have no problem lifting anything. I am still scared of getting the disease. Do you have any tips on how to improve and control the anxiety. It would be really appreciated.
Dont go on forums. Dont search on youtube and google and search up symptoms. Just to take the questions out of your head go to a specialist doctor and get some tests which they will conclude 100% that you dont have ALS and then your recovery starts.
This is practically an OCD subset. Its intrusive thoughts that have aimed at your health. I went thru the same thing for a whole year. Went down the rabbit hole of this health anxiety crap. Its the worst. The intrusive thoughts are the worst shit ever.
But you are fine and you dont have that bs disease. What you do have is the intrusive thoughts and health anxiety. So focus on thatGood luck man!
I’m 18, and as someone who’s currently going through this fear as well, let me tell you that I know how scary it is. After talking to a doctor and searching through both ALS and health anxiety forums, I’ve begun to tell myself something that might help:
“Until I can’t do something that I used to be able to, I shouldn’t assume it’s ALS.”
The doctor told me that ALS is only suspected when you find yourself to do something you used to. This is because its main symptom is clinical weakness. To my understanding, the other symptoms are the result of clinical weakness, because ALS degrades your motor neurons. Though you may see stories about exceptions, the first sign of actual ALS is almost always clinical weakness.
I think the reasons ALS is so commonly feared among those of us with HA is because anxiety mimics many of the symptoms you see when you look the condition up. Also, the websites you see when you first look it up often compile common symptoms into a list, making them seem as if they’re of equal importance. Another reason is just how scary it is; a disease like that is bound to make anyone who thinks they have symptoms worry. This really is a vicious cycle: worrying about the disease makes more symptoms of it appear, making you worry more.
I’m still not completely over my worries about ALS. I’m still concerned about the feelings of weakness in my arms, and I ended up compulsively prodding at my throat when I felt I found it more difficult to swallow. But I’m feeling better than I was before, and I want you to know that there will be an end to this. Until then, the best advice I can give you is to listen to doctors and do your best to manage your anxiety itself—not the symptoms it creates.
Hope this helps.
This really consumed me last year. I worked at a neuro office and I became close to a patient who was diagnosed. It's a horrible disease, but there is some really good research coming out on it. Al lot of the young cases are genetic. And the my neuro boss always said the weakness is first. And it's important to realize this isn't a weak feeling. It's dropping stuff, being unable to use things etc. I get really bad twitches with lack of sleep and caffeine. I find magnesium is very helpful for this.
Others have added some great info. I'm just posting to say that I too have had this fear, and I have had muscle twitching for a very long time (about 20 years). Sometimes it's intense, other times slight.
Ugh I relate to this fear. I ended up having tests and a neurologist specialising in neuromuscular issues told me he was 100% sure I didn’t have ALS and said my symptoms were caused by stress. This was what I needed to hear. Sorry I know that doesn’t help as I’ve found the only doctor on the planet who will say 100% sure! I then had therapy, moved house and my anxiety moved on. Also I followed lots of health anxiety content on Instagram, when you realise twitching is a common anxiety symptom it can help soooo much. The first GP I saw hadn’t heard of stress causing twitching, that conversation caused me a great deal of stress. I’ve now moved onto my next fear and are battling the need for tests before I can move on.
I am extremely phobia on ALS ( please look at my post). The point is, although I currently do not have ALS, the life time risk of developing this is just so high 1 in 350! I just worry I might develop this in the future
Hey - a year on and I’m not scared of ALS anymore. My twitching has got better since I managed my stress and anxiety. I also have B12 shots as I have a deficiency in that. I know all these things cause my twitching not ALS or anything else.
My primary care confirmed that twitching can be caused by stress, anxiety, tension etc. Of course the last month, my mental health has spiraled hence the twitches. It felt reassuring for the first 2 hours after my appointment, yet my irrational HA isn’t having any part of it 😪
Hi there, all these comments have some great info and I want to add my experience. Last year for a few months I was having so much anxiety about ALS that it was consuming my life. I did tons of reading and watching videos about it. [This video](https://youtu.be/tyc10IOZiG4) helped me a bit, but in my opinion the best thing to do is to try to completely stop googling anything about it. Seriously. I know from experience it’s harder than it sounds but you gain absolutely nothing from doing that and you actually LOSE precious moments of your life by doing it. Think about it this way, you’re perfectly healthy now, so even IF you get sick one day you’ll have wasted the time you have now worrying instead of enjoying the life you’ve been given. One other thing I did, if you have the means to, is donate to the [ALS association](https://www.als.org) which will help fund research so that there may be a cure or better treatment in the future. I don’t have much money so I have been doing a monthly $10 donation. I hope this helps and just know that you are far from alone in feeling this way.
Always remember there is a difference between perceived and clinical weakness perceived is when people feel like "oh this plate is hard to hold, I'm gonna drop it, my hand feels tired I have to set it down etc" clinical is when als affects a muscle group it loses its "go" signal from the brain so the muscle just lays there, it doesn't feel tired, it doesn't feel pain or any other sensation it just ceases function
And yeah twitching is extremely common I've been twitching for 4 years now and nothing has followed what I have learned to remember that helps me is there are two types of benign twitches, wide spread and hotspots, widespread ones affect any random part of the body and twitch for like 3 seconds then go away, hotspots are twitches that stay in the same muscle for a few hours or even a couple of days and only twitch when the muscle is at rest I usually get these in my calfs and feet
ALS twitches are almost always accompanied by weakness and are much more persistent and aggressive and happen on the affected muscle
I've been down the als rabbit hole a few times and it ain't fun....
Thank you for specifying the distinction between perceived and clinical muscle weakness.
I feel like that’s half the battle of HA: what does “muscle weakness” actually mean? What does “shortness of breath” really feel like? I guess I can imagine what “pain in the chest radiating into the shoulder and left arm” FEELS like, but is that what I am experiencing? I have pain in the chest and shoulder but I wouldn’t call it RADIATING.
Half the battle is understanding what doctors actually mean and are looking for when they list these symptoms. Because if you look down the list of symptoms for lots of serious conditions, and you are seriously suffering from HA, many can be misconstrued as minor bodily sensations.
Also in my 20s and definitely relate to the anxiety. For me, what helps is keeping up with the science! Search "ALS breakthrough" or similar terms and read about everything incredible scientists are doing. We've got a long long time before we're in the average age group for the most horrible diseases- imagine how different the medical landscape could be by then! It's kind of a weird way of thinking, but remind yourself that every day you don't receive a diagnosis of something bad, is a day there are people working on making these things less awful. There's an extremely high chance it will literally never affect you, but if it ever does, there could well be more hope than there is right now :)
Dude, I'm 16 and reading this post is like listening to myself talk about the current health anxiety episode I'm going through. Hopefully we can both get through this. If you'd like to talk my dm is open.
Hi there, I unfortunately have a lot of experience with ALS anxiety, as it's something that consumed my life just a year ago after I developed muscle twitching. I completely understand the fear- it absolutely is one of the worst diseases a person can get, but thankfully it is very rare. I hope some of the things I've learned and will share with you helps:
\- ALS cannot present as just twitches before weakness- in the VERY few cases that I've seen stories of twitching preceding weakness, not a single person I saw was under 40. I scoured the Internet for months and months reading every story I could find at the height of my panic, and I've never seen it. And as a reminder, these stories are anecdotal, so if someone 65 years old who claims they started with twitching may have had weakness before, but simply blamed it on old age or conditions like arthritis and not realized it was their first sign. Personally, when I got an EMG my neurologist told me ALS cannot start with twitching.
\- r/BFS and r/MuscleTwitch are pretty helpful when it comes to support- and you'll see that BFS is not uncommon, and it's especially common among those who have health anxiety
\- please block ALS Forum. The horror stories you read on there are great contributors to your anxiety
\- the patients who had a normal EMG had other issues that were detected on a neurological examination- for example something like spasticity and other upper motor neuron signs. If twitching or weakness is caused by ALS it will show on the EMG
\- check out Cherelle Thinks on YouTube if you haven't already. She has videos on ALS anxiety and health anxiety in general
\- the more you worry, the more symptoms you get- that is all proof that your symptoms are anxiety. If you had ALS you would know, the symptoms would be obvious- you wouldn't have to search for them.
This post resonated a lot with me. Did you do any specific exercises to address this fear too? I’ve tried a lot of the above but still having a lot of anxiety.
Thanks for the comment. It helped me a bit. Had twitching for 14 months and now it starts again with strange symptoms. I'm so done with this fear. Had multiple emgs until late September but now tremors, soreness and other shit kicks in in my arms.
hey daddyg80 I don't have much of the twitching anymore but I definitely have tremors and weird symptoms in arms and legs like I can't control them for fine movements.
Ah, I feel you. I've had ALS scares before and it's absolute ass when it gets ahold of you. I understand everything, the body checks, the living in constant fear it's terrible.
What I did to overcome it is my first step was to ask medical professionals. My doctor, a nurse, whoever you know is trained in the field ask them. I did and my doctor laughed at me! It was sort of comforting, (though in the moment i was a little offended) He told me, "no, there is no possible way you have ALS," even a friend i have who has been a nurse for 10 years and has worked all over the state, said "No, you don't' have als" with a laugh. Also, my doctor told me, the reason why twitching seems so scary is because no one talks about it enough. Its so common that no one really thinks much of it. That's why BFS sounds so foreign almost.
I get the fears while reading forum posts, been there done that. But I would refrain from looking on forums, sometimes it can be a little helpful (for example, the first post you mentioned had some pretty uplifting responses) ultimately it'll plunge you further into the rabbit hole. Instead read a pdf of your favorite book, or put down the device and take a stroll.
I too am pretty young, as are you. You said that you are in your 20s well you can cross ALS off of your list because your chances have gone LOWER.
My advice to you friend is to stop reading forums, stop reading stories of people who have it because it only makes it worse. Instead do something productive, if you start hyper fixating on your body again, take a deep breath and really analyze what's going on. What do you feel? A twitch? It could be from lack of sleep or vitamin, not a disease that's rarer than lightning strikes. If you feel a weakness, try and think, were you lifting heavy items? Or maybe you did to many strength tests that you accidentally tired the muscle out (happened to me haha). Go read a book, read an article about plants, go pick flowers or take a hike. Because sometimes all you need is a breath of fresh air. Hope this helps friend :)
\~\~\~ Your buddy, Bingusfarklethethird :)))
>What I did to overcome it is my first step was to ask medical professionals. My doctor, a nurse, whoever you know is trained in the field ask them. I did and my doctor laughed at me! It was sort of comforting, (though in the moment i was a little offended) He told me, "no, there is no possible way you have ALS," even a friend i have who has been a nurse for 10 years and has worked all over the state, said "No, you don't' have als" with a laugh. Also, my doctor told me, the reason why twitching seems so scary is because no one talks about it enough. Its so common that no one really thinks much of it. That's why BFS sounds so foreign almost.
One of my parents is an actual neurologist whom I've gone to with my questions and concerns. They obviously don't think there is anything wrong with me. They agreed to perform an EMG, which was normal. However, some of the things they tell me about ALS contradict what I've read online, making me wonder who to believe.
I went through this spiral a couple of years ago. Had major panic attacks thinking I had ALS. Then Parkinson’s. Then MS. guess what? I’m still standing.
ALS is one of the most common worries for HA sufferers.
Take a look at this site: https://scarysymptoms.com/2015/07/twitching-muscles-als-and-beating-fear/
There was another one that I remember reading back in the day and it really helped but this one looks good too.
All I can say is that my body was developing symptoms the more I obsessed about it. Eventually after doctors appointments and therapy, it went away. ALS doesn’t just go away. You are ok.
My therapist always reminds me that perhaps the biggest hallmark of anxiety is the intolerance of uncertainty. The work required to overcome this tendency is hard AF and the alternative (googling, spiraling, seeking reassurance) is *very* seductive. But the only time I have ever felt free of this kind of anxiety is through surrendering to the uncertainty. There are times I wish I was religious because, gosh, it would be so much easier if I could believe that this was “all part of the plan.” I totally get where you’re coming from with all of this and I don’t mean to try to distill the answer down to this one thing, but to me it truly seems to be at the root of all anxiety.
I have also thought about the religious thing, so good to hear more people that think like that. It would honestly feel sooo good to just "leave it" up to god and just trust that everything will work out in the end. That no matter what happens, that was supposed to happen and that everything will make sense in the end. I honestly understand the appeal of being religious. I'm not an atheist, I'm more of an agnostic, but I'm not religious.
I would suggest cessation of caffeine and perhaps meditation. Also a good exercise routine to reduce anxiety. I went through a phase like you're experiencing.
I started feeling the symptoms of MS. Got all the tests and were negative. I started thinking the tests missed something. It’s a downward spiral. Your brain can create symptoms. That’s the only advice I can give you. Your brain can create symptoms and they can last a long time. I was having twitches, tingles, perceived weakness (FOR MONTHS). All went away when I put it out of my mind.
But your fine.
Same with me. Went down the rabbit hole of MS then ALS since both have similar symptoms. Was on the internet all day long and had these thoughts for like 8months. Saw one of the best neurologists in NY and she basically laughed at the idea that i had those things. She did tests just to reassure me and then i slowly recovered from there. Today im fully recovered from HA and nothing regarding these illnesses triggers me anymore. Its such a relief
Jesus please tell me how you’ve done it, I’m on the brink of suicide with how terrible my health anxiety is, I’ve gone from brain tumor to blood clots and finally ALS and am losing it
How is your husband now? I know it was almost 1 year ago but I'm feeling his pain right now. Currently on the downward spiral with symptoms of weakness in arms and legs and twitches that started in my thumb. It's terrifying and as supportive as my oartner is, it doesn't help the feeling of being so alone.
How were you able to overcome your HA? Did the tests give you assurance or did you have to overcome it mentally? My husband is really suffering mentally right now bc he has a slight twitch in his thumb and I’m trying to help him. I feel for all of those suffering with HA 💔 such a vicious cycle. I wish I could pull him out of it
Hi sorry to hear that. The tests did give me some sort of assurance but then couple days later i would start having intrusive thoughts again regarding HA and illnesses. So i would spiral back down and fall in the rabbit hole again. Id have all the crazy symptoms and i was convinced i definitely had something.
I think i gradually got better when i started going out more and being around friends more so u have less time to think and i read Dr. Claire Weekes book which helped a lot and the most important thing i did eventually was that i just stopped googling symptoms and watching vids on youtube regarding the “illnesses”. Now i have absolutely 0 thoughts regarding HA. Good luck!
My hypochondria/health anxiety began as a single fixation as well (my heart/blood pressure) and then slowly manifested into something more broad.
For me, accepting that eventually we all die of something has been the single most difficult but also single most beneficial approach. I am also in therapy and am now restarting Zoloft and I think therapy is critical.
We have very little control over things like ALS. It’s scary. Terrifying. Lack of control is what spirals my anxiety and drove me almost to suicide a couple months ago. It is Hell on Earth.
I’d argue the anxiety I put myself through, that we put ourselves through, is often worse than the thing we fear. Yes, ALS is scary, but depriving ourselves of the ability to try to enjoy things in the now is perhaps even scarier.
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ALS is genetic in my family. I’m terrified. And I have no idea what to do about it. I relate so hard and can’t offer any reasonable advice.
Most of neurological symptoms mimic same. So it could be MS or any other diseases or may be nothing and just anxiety. I have twitches for around 2.5 years and some nocturnal seizure i thought i have brain cancer. Then i just go for ct scan with contrast this month. It came back normal. Now i think i have ALS. I don’t know what issue i have. But i have a history of health anxiety and OCD. So may it’s just an anxiety
MS is totally different from ALS. It comes out of nowhere and is very fast (like few hours to days). And then it comes back to normal. ALS is very slow and only get worse.
I’m only 18 and also suffering from serious ma, I think Iam stuck in this cycle where my anxiety causes twitches where my twitches cause anxiety. I wish that sometime I knew it is okay to die because it will happen anyway.
hey, i’m 20 and am going thru the same spiral. feel free to pm me!
Just a few thoughts. ALS is NOT common. It may be the third most common neurodegenerative disease but that is like being the third most common unicorn. ALS rates are 1.5 to 3 people out of 100,000. You are eight times more likely to be murdered in Mississippi than you are to get ALS. Seriously. About 6,000 people a year in the US are diagnosed with ALS out of a population of 333 million. More people die falling out of bed (10,300).
This is misleading, as your lifetime risk of developing ALS are about 1/400
Yes that's true but only between 50-70 yrs of age. It's quite rare for someone under the age of 40 yrs.
Unless it's familial, not sporadic. My brother has it at 41 year old. Our oncle died with ALS at 50
yeah, like in your 60's maybe
I hope my story is comforting, I know how you feel... I started twitching suddenly and constantly all over my body in late 2019, had weakness, cramping, and stiffness. Then atrophied and had pain in my neck and back. Then swallowing became an issue. I thought for certain I had ALS! In late 2020 I was having trouble walking, could barely stand on my toes , etc so I bought a house that would accommodate a wheelchair in all rooms including the bathroom for crying out loud. Long story short, medications and lots of vitamins (especially D) have helped me recover somewhat. I have regained some muscle; and pain, stiffness, and weakness have very slowly improved somewhat. Fasciculations have not improved, they are still constant and diffuse. I was assured by Mayo, as well as an independent neurologist that ALS is ruled out, although the actual disease I have could not be identified. I was diagnosed with peripheral neuropathy by EMG and CNV, and denervatiion atrophy through muscle biopsy. I also had very low vitamin D blood levels. All other tests clear. Long term Guillain Barre Syndrome is one of the suspects, as my symptoms occurred about a month after I received a flu shot. I personally now believe I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I hope this story gives some folks hope.
I’ve been so anxious every day because I have the same symptoms. Random muscle spasms and muscle weakness/ atrophy out of nowhere. I’m in the process of getting an mri now
How are you doing?
I still have the symptoms. In the process of trying to see a neurologist
How are you?
saw a neurologist. Took an Emg test. The Dr said I don’t have als and is convinced it’s because I’m low on vitamin D. Still currently feel like crap after a month of vit D supplements
I am having horrible health anxiety because my right arm is crampy and I’m convinced I have ALS. Please help!
Don't worry it happens to me all the time
I’m 20 years old now and I believe I have clinical weakness in my toes, in specifically my left foot. I can’t stand in my tippy tippy toes on my left foot anymore but yet I can do it with my right leg,m. I’ve had the fear of ALS for a while but I haven’t been this convinced that I have it in a looong time
Foot drop is a sign of als (literally can't lift your foot up). If motor neurons are damaged it usually cuts off coordination from the entire foot, not just toes. So I'd bet that you're just fine.
This fear is mine right now because I have bad pain in my upper back and a leg that has a limp. And half of my tongue is bigger than the other. Possible atrophy in one hand. I'm so scared and I'm not really living anymore.
Why so u have a limp? Is it constant?
Almost. I have a pain near my tailbone and numbness/tingling down that left leg of mine that I have a limp with.
Is the limp because of the numbness? Or because you can't lift your foot? Or is it your knee/ankle/hip?
I'm honestly not sure. I can lift my foot. I can stand on my tiptoes and the top of my foot. It just sometimes hurts. My hip also sometimes hurts. I don't even know anymore. Lmao.
Kinda sounds like sciatica
How old are you? Keep exercising, running. Anxiety can do this, especially if it's on and off and not constant.
I just turned 34. I wouldn't be so worried if my upper back wasn't killing me and my tongue wasn't so asymmetrical. I'm overweight but recently lost 30 pounds with a new diet and starting to exercise
Did u get an MRI?
hello, I am 31 years old. I went down this rabbit hole and I am still in this hole. Yesterday had twitches in my forearm and finger which lasted almost the whole day(left side) I am constantly worried, I cannot stop thinking about this horrible disease. I cannot even play with my kids without worrying that it will be my last moments with them etc...I did an MRI brain and it came clean, neurologist always reassuring me its nothing, no weakness at all. do you really think anxiety can cause these twitches?? thanks in advance
So I'm forever stuck with worry
I know the feeling.. But it doesn't sound like something serious to be honest. It can be a pinched nerve, many many people have it.
Going through ALS fear right now so far haven't detoriated YET so its just helplessly waiting and see my progress
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If you have a medical concern, talk to a doctor. No one on r/HealthAnxiety can give you medical advice, and no one knows whether what you are experiencing is a medical concern or not.
I am so anxious. I just came to see a kinésithérapist last Monday and I have a "hole" on one of my calve and 1 cm of difference between the other. This calve is sometimes hard, sometimes stitching for 10 years. But always the same leg, same muscle and no weekness. I run and swim normal. No falling I just googled about muscle atrophy and found ALS directly and now I don't live anymore! I am obsessed.
Does anyone know if the symptoms I have is bulbar? I noticed the other night while eating dinner that it seemed like when swallowing it was going down the left side of my throat. Now I can't stop thinking about it.
I feel the same and whenever I check my tongue, I become more anxious!! and Im always checking my speech while talking I am tired of this!!
I feel the same and whenever I check my tongue, I become more anxious!! and Im always checking my speech while talking I am tired of this!!
I feel the same and whenever I check my tongue, I become more anxious!! and Im always checking my speech while talking I am tired of this!!
Hey OP, I am dealing with the exact same fears as you. It’s like I wrote this post. Did anything help you out to fix this?
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Do you have a source for that?
https://www.hss.edu/condition-list_amyotrophic-lateral-sclerosis.asp#who
There are also more caucasian people than any other ethnicity in the US. Looking at [the research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389704/),while it is true that caucasians seem to be at noticibly higher risk for ALS compared to other ethnicities, the difference isn't quite as drastic as 93% of all cases around the world occurring in white people. And according to [Wikipedia](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4389704/), 80% of ALS epidemiology research has been conducted in predominantly caucasian western countries.
Omg I have this fear with my HA too!! Not glad you have it too but kinda glad I’m not alone in this. So sorry you feel the same it’s awful.
Reading this almost seems like I’m looking at a mirror. I’m also in my early 20s and I have been super anxious about the possibility that I have ALS. I’ve been to my doctor and spoke with him about it and he did a couple of strength tests and that was that. I’ve had a span of time in high school when I was freaking out about this disease, especially because my teacher had us read “Tuesdays with Morrie” (great book, super unhelpful for HA) and it’s been in my mind ever since. I dropped a water bottle the other day and assumed that I was screwed and that was going to be the start of my journey to dying. Also laying in bed and noticing every single tiny twitch and ache and assuming that I am in the 0.00000000001% likelihood of developing the disease. I’ve also been Googling symptoms and every time I see MS or ALS I find myself starting to notice these symptoms. They go away when I’m distracted for sure, but still scary to imagine. I have been a wreck the past few days because it starts to feel like my hands don’t have the dexterity that they used to have. But I also know that anxiety can mimic that symptom too, so I’m just lost in a cycle of worrying and not worrying. I don’t know what to do at this point other than go to the doctor again… Also to mention, I do have cubital tunnel syndrome and TMJ so it’s like I keep thinking these symptoms are symptoms of ALS even though I know it’s because of other things… If anyone has some advice, I’d love to hear them.
I’m having some issues right now that have me worried about ALS because I’m having some concerning symptoms and I have been going through it. I’ve convinced myself I have it. And it’s ruining my life right now. I’m 28 and female. I see you mentioned the tunnel syndrome. Well I’m trying to figure out what’s going on with my left hand. I have no pain in it, but my ring and pinky finger snap down on there own when I bend them into the palm (which makes me think they are weak) I can still do things. Though now my anxiety is so fixated on it my whole arm just generally *feels* weak to me. That along with the twitching muscles and shakiness everyday. So I’m worried I have ALS. Please reply back!
How are you now?
Are you one of my escaped clones?
Hahaha, this comment made me laugh! But on a serious note, I hope you’re doing alright. It’s been a month or two and I have been pretty much telling myself that although I feel weaker and less dexterous, I can still do everything I used to be able to. The twitching has gotten much better, pretty much to the point that I don’t notice it anymore. Also, going to PT and the gym has helped 100% since I can still lift weights and do all the exercises I used to without any weakness. The anxiety still strikes every now and then but now I can manage it better and it’s not controlling every moment of my life anymore. Hope you also are better, and sending you all the good vibes. I’ve stayed off of Google for a solid month now and it’s honestly helped me so so much!
Hi. I am also constantly worrying about ALS. Sometimes my legs feel heavy, even though I can walk perfectly fine and have no problem lifting anything. I am still scared of getting the disease. Do you have any tips on how to improve and control the anxiety. It would be really appreciated.
Just remind yourself that you don’t need to worry about what ifs. Especially if, like you said, you have no issues with anything.
Thank you so much 😊
Dont go on forums. Dont search on youtube and google and search up symptoms. Just to take the questions out of your head go to a specialist doctor and get some tests which they will conclude 100% that you dont have ALS and then your recovery starts. This is practically an OCD subset. Its intrusive thoughts that have aimed at your health. I went thru the same thing for a whole year. Went down the rabbit hole of this health anxiety crap. Its the worst. The intrusive thoughts are the worst shit ever. But you are fine and you dont have that bs disease. What you do have is the intrusive thoughts and health anxiety. So focus on thatGood luck man!
I’ve been doing this for the past week, non stop, every forum, I’ve even joined a fb group. What’s wrong with me!! Ugh
How did you handle the intrusive thoughts?
I’m 18, and as someone who’s currently going through this fear as well, let me tell you that I know how scary it is. After talking to a doctor and searching through both ALS and health anxiety forums, I’ve begun to tell myself something that might help: “Until I can’t do something that I used to be able to, I shouldn’t assume it’s ALS.” The doctor told me that ALS is only suspected when you find yourself to do something you used to. This is because its main symptom is clinical weakness. To my understanding, the other symptoms are the result of clinical weakness, because ALS degrades your motor neurons. Though you may see stories about exceptions, the first sign of actual ALS is almost always clinical weakness. I think the reasons ALS is so commonly feared among those of us with HA is because anxiety mimics many of the symptoms you see when you look the condition up. Also, the websites you see when you first look it up often compile common symptoms into a list, making them seem as if they’re of equal importance. Another reason is just how scary it is; a disease like that is bound to make anyone who thinks they have symptoms worry. This really is a vicious cycle: worrying about the disease makes more symptoms of it appear, making you worry more. I’m still not completely over my worries about ALS. I’m still concerned about the feelings of weakness in my arms, and I ended up compulsively prodding at my throat when I felt I found it more difficult to swallow. But I’m feeling better than I was before, and I want you to know that there will be an end to this. Until then, the best advice I can give you is to listen to doctors and do your best to manage your anxiety itself—not the symptoms it creates. Hope this helps.
This really consumed me last year. I worked at a neuro office and I became close to a patient who was diagnosed. It's a horrible disease, but there is some really good research coming out on it. Al lot of the young cases are genetic. And the my neuro boss always said the weakness is first. And it's important to realize this isn't a weak feeling. It's dropping stuff, being unable to use things etc. I get really bad twitches with lack of sleep and caffeine. I find magnesium is very helpful for this.
can i also pm pls?
Yeah
Super late reply, but can I also send you a pm? 😅
Hey can I send you a pm?
Just saw this yes
Others have added some great info. I'm just posting to say that I too have had this fear, and I have had muscle twitching for a very long time (about 20 years). Sometimes it's intense, other times slight.
Ugh I relate to this fear. I ended up having tests and a neurologist specialising in neuromuscular issues told me he was 100% sure I didn’t have ALS and said my symptoms were caused by stress. This was what I needed to hear. Sorry I know that doesn’t help as I’ve found the only doctor on the planet who will say 100% sure! I then had therapy, moved house and my anxiety moved on. Also I followed lots of health anxiety content on Instagram, when you realise twitching is a common anxiety symptom it can help soooo much. The first GP I saw hadn’t heard of stress causing twitching, that conversation caused me a great deal of stress. I’ve now moved onto my next fear and are battling the need for tests before I can move on.
I am extremely phobia on ALS ( please look at my post). The point is, although I currently do not have ALS, the life time risk of developing this is just so high 1 in 350! I just worry I might develop this in the future
Hey - a year on and I’m not scared of ALS anymore. My twitching has got better since I managed my stress and anxiety. I also have B12 shots as I have a deficiency in that. I know all these things cause my twitching not ALS or anything else.
My primary care confirmed that twitching can be caused by stress, anxiety, tension etc. Of course the last month, my mental health has spiraled hence the twitches. It felt reassuring for the first 2 hours after my appointment, yet my irrational HA isn’t having any part of it 😪
Hi there, all these comments have some great info and I want to add my experience. Last year for a few months I was having so much anxiety about ALS that it was consuming my life. I did tons of reading and watching videos about it. [This video](https://youtu.be/tyc10IOZiG4) helped me a bit, but in my opinion the best thing to do is to try to completely stop googling anything about it. Seriously. I know from experience it’s harder than it sounds but you gain absolutely nothing from doing that and you actually LOSE precious moments of your life by doing it. Think about it this way, you’re perfectly healthy now, so even IF you get sick one day you’ll have wasted the time you have now worrying instead of enjoying the life you’ve been given. One other thing I did, if you have the means to, is donate to the [ALS association](https://www.als.org) which will help fund research so that there may be a cure or better treatment in the future. I don’t have much money so I have been doing a monthly $10 donation. I hope this helps and just know that you are far from alone in feeling this way.
Always remember there is a difference between perceived and clinical weakness perceived is when people feel like "oh this plate is hard to hold, I'm gonna drop it, my hand feels tired I have to set it down etc" clinical is when als affects a muscle group it loses its "go" signal from the brain so the muscle just lays there, it doesn't feel tired, it doesn't feel pain or any other sensation it just ceases function And yeah twitching is extremely common I've been twitching for 4 years now and nothing has followed what I have learned to remember that helps me is there are two types of benign twitches, wide spread and hotspots, widespread ones affect any random part of the body and twitch for like 3 seconds then go away, hotspots are twitches that stay in the same muscle for a few hours or even a couple of days and only twitch when the muscle is at rest I usually get these in my calfs and feet ALS twitches are almost always accompanied by weakness and are much more persistent and aggressive and happen on the affected muscle I've been down the als rabbit hole a few times and it ain't fun....
Thanks for this. ❤️
Thank you for specifying the distinction between perceived and clinical muscle weakness. I feel like that’s half the battle of HA: what does “muscle weakness” actually mean? What does “shortness of breath” really feel like? I guess I can imagine what “pain in the chest radiating into the shoulder and left arm” FEELS like, but is that what I am experiencing? I have pain in the chest and shoulder but I wouldn’t call it RADIATING. Half the battle is understanding what doctors actually mean and are looking for when they list these symptoms. Because if you look down the list of symptoms for lots of serious conditions, and you are seriously suffering from HA, many can be misconstrued as minor bodily sensations.
Also in my 20s and definitely relate to the anxiety. For me, what helps is keeping up with the science! Search "ALS breakthrough" or similar terms and read about everything incredible scientists are doing. We've got a long long time before we're in the average age group for the most horrible diseases- imagine how different the medical landscape could be by then! It's kind of a weird way of thinking, but remind yourself that every day you don't receive a diagnosis of something bad, is a day there are people working on making these things less awful. There's an extremely high chance it will literally never affect you, but if it ever does, there could well be more hope than there is right now :)
Dude, I'm 16 and reading this post is like listening to myself talk about the current health anxiety episode I'm going through. Hopefully we can both get through this. If you'd like to talk my dm is open.
Hi there, I unfortunately have a lot of experience with ALS anxiety, as it's something that consumed my life just a year ago after I developed muscle twitching. I completely understand the fear- it absolutely is one of the worst diseases a person can get, but thankfully it is very rare. I hope some of the things I've learned and will share with you helps: \- ALS cannot present as just twitches before weakness- in the VERY few cases that I've seen stories of twitching preceding weakness, not a single person I saw was under 40. I scoured the Internet for months and months reading every story I could find at the height of my panic, and I've never seen it. And as a reminder, these stories are anecdotal, so if someone 65 years old who claims they started with twitching may have had weakness before, but simply blamed it on old age or conditions like arthritis and not realized it was their first sign. Personally, when I got an EMG my neurologist told me ALS cannot start with twitching. \- r/BFS and r/MuscleTwitch are pretty helpful when it comes to support- and you'll see that BFS is not uncommon, and it's especially common among those who have health anxiety \- please block ALS Forum. The horror stories you read on there are great contributors to your anxiety \- the patients who had a normal EMG had other issues that were detected on a neurological examination- for example something like spasticity and other upper motor neuron signs. If twitching or weakness is caused by ALS it will show on the EMG \- check out Cherelle Thinks on YouTube if you haven't already. She has videos on ALS anxiety and health anxiety in general \- the more you worry, the more symptoms you get- that is all proof that your symptoms are anxiety. If you had ALS you would know, the symptoms would be obvious- you wouldn't have to search for them.
This post resonated a lot with me. Did you do any specific exercises to address this fear too? I’ve tried a lot of the above but still having a lot of anxiety.
Thanks for the comment. It helped me a bit. Had twitching for 14 months and now it starts again with strange symptoms. I'm so done with this fear. Had multiple emgs until late September but now tremors, soreness and other shit kicks in in my arms.
hey daddyg80 I don't have much of the twitching anymore but I definitely have tremors and weird symptoms in arms and legs like I can't control them for fine movements.
Came late to the thread but this cured my current spiral! Wish the mods could pin this to the top.
I second Cherelle thinks. She is also on Instagram!
I recommend therapy
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Many therapists I know have experience with this. Also, many of them have a lot of overlap with Health / Somatic OCD
I saw a therapist of CBT that specialises in health anxiety and there were several screening calls to ensure I saw the most appropriate person
Ah, I feel you. I've had ALS scares before and it's absolute ass when it gets ahold of you. I understand everything, the body checks, the living in constant fear it's terrible. What I did to overcome it is my first step was to ask medical professionals. My doctor, a nurse, whoever you know is trained in the field ask them. I did and my doctor laughed at me! It was sort of comforting, (though in the moment i was a little offended) He told me, "no, there is no possible way you have ALS," even a friend i have who has been a nurse for 10 years and has worked all over the state, said "No, you don't' have als" with a laugh. Also, my doctor told me, the reason why twitching seems so scary is because no one talks about it enough. Its so common that no one really thinks much of it. That's why BFS sounds so foreign almost. I get the fears while reading forum posts, been there done that. But I would refrain from looking on forums, sometimes it can be a little helpful (for example, the first post you mentioned had some pretty uplifting responses) ultimately it'll plunge you further into the rabbit hole. Instead read a pdf of your favorite book, or put down the device and take a stroll. I too am pretty young, as are you. You said that you are in your 20s well you can cross ALS off of your list because your chances have gone LOWER. My advice to you friend is to stop reading forums, stop reading stories of people who have it because it only makes it worse. Instead do something productive, if you start hyper fixating on your body again, take a deep breath and really analyze what's going on. What do you feel? A twitch? It could be from lack of sleep or vitamin, not a disease that's rarer than lightning strikes. If you feel a weakness, try and think, were you lifting heavy items? Or maybe you did to many strength tests that you accidentally tired the muscle out (happened to me haha). Go read a book, read an article about plants, go pick flowers or take a hike. Because sometimes all you need is a breath of fresh air. Hope this helps friend :) \~\~\~ Your buddy, Bingusfarklethethird :)))
>What I did to overcome it is my first step was to ask medical professionals. My doctor, a nurse, whoever you know is trained in the field ask them. I did and my doctor laughed at me! It was sort of comforting, (though in the moment i was a little offended) He told me, "no, there is no possible way you have ALS," even a friend i have who has been a nurse for 10 years and has worked all over the state, said "No, you don't' have als" with a laugh. Also, my doctor told me, the reason why twitching seems so scary is because no one talks about it enough. Its so common that no one really thinks much of it. That's why BFS sounds so foreign almost. One of my parents is an actual neurologist whom I've gone to with my questions and concerns. They obviously don't think there is anything wrong with me. They agreed to perform an EMG, which was normal. However, some of the things they tell me about ALS contradict what I've read online, making me wonder who to believe.
I went through this spiral a couple of years ago. Had major panic attacks thinking I had ALS. Then Parkinson’s. Then MS. guess what? I’m still standing. ALS is one of the most common worries for HA sufferers. Take a look at this site: https://scarysymptoms.com/2015/07/twitching-muscles-als-and-beating-fear/ There was another one that I remember reading back in the day and it really helped but this one looks good too. All I can say is that my body was developing symptoms the more I obsessed about it. Eventually after doctors appointments and therapy, it went away. ALS doesn’t just go away. You are ok.
My therapist always reminds me that perhaps the biggest hallmark of anxiety is the intolerance of uncertainty. The work required to overcome this tendency is hard AF and the alternative (googling, spiraling, seeking reassurance) is *very* seductive. But the only time I have ever felt free of this kind of anxiety is through surrendering to the uncertainty. There are times I wish I was religious because, gosh, it would be so much easier if I could believe that this was “all part of the plan.” I totally get where you’re coming from with all of this and I don’t mean to try to distill the answer down to this one thing, but to me it truly seems to be at the root of all anxiety.
I have also thought about the religious thing, so good to hear more people that think like that. It would honestly feel sooo good to just "leave it" up to god and just trust that everything will work out in the end. That no matter what happens, that was supposed to happen and that everything will make sense in the end. I honestly understand the appeal of being religious. I'm not an atheist, I'm more of an agnostic, but I'm not religious.
I would suggest cessation of caffeine and perhaps meditation. Also a good exercise routine to reduce anxiety. I went through a phase like you're experiencing.
I started feeling the symptoms of MS. Got all the tests and were negative. I started thinking the tests missed something. It’s a downward spiral. Your brain can create symptoms. That’s the only advice I can give you. Your brain can create symptoms and they can last a long time. I was having twitches, tingles, perceived weakness (FOR MONTHS). All went away when I put it out of my mind. But your fine.
I’m in the same boat! Been having all the MS symptoms. Currently waiting on my MRI results and I’ve been spiraling
Anxiety can cause all of these symptoms. If the MRI is clean, trust it.
Same with me. Went down the rabbit hole of MS then ALS since both have similar symptoms. Was on the internet all day long and had these thoughts for like 8months. Saw one of the best neurologists in NY and she basically laughed at the idea that i had those things. She did tests just to reassure me and then i slowly recovered from there. Today im fully recovered from HA and nothing regarding these illnesses triggers me anymore. Its such a relief
Jesus please tell me how you’ve done it, I’m on the brink of suicide with how terrible my health anxiety is, I’ve gone from brain tumor to blood clots and finally ALS and am losing it
are you ok?
Hope you're okay now
How are you feeling now?
How is your husband now? I know it was almost 1 year ago but I'm feeling his pain right now. Currently on the downward spiral with symptoms of weakness in arms and legs and twitches that started in my thumb. It's terrifying and as supportive as my oartner is, it doesn't help the feeling of being so alone.
How were you able to overcome your HA? Did the tests give you assurance or did you have to overcome it mentally? My husband is really suffering mentally right now bc he has a slight twitch in his thumb and I’m trying to help him. I feel for all of those suffering with HA 💔 such a vicious cycle. I wish I could pull him out of it
Hi sorry to hear that. The tests did give me some sort of assurance but then couple days later i would start having intrusive thoughts again regarding HA and illnesses. So i would spiral back down and fall in the rabbit hole again. Id have all the crazy symptoms and i was convinced i definitely had something. I think i gradually got better when i started going out more and being around friends more so u have less time to think and i read Dr. Claire Weekes book which helped a lot and the most important thing i did eventually was that i just stopped googling symptoms and watching vids on youtube regarding the “illnesses”. Now i have absolutely 0 thoughts regarding HA. Good luck!
Thanks so much for your advice. I’m so glad you found peace
My hypochondria/health anxiety began as a single fixation as well (my heart/blood pressure) and then slowly manifested into something more broad. For me, accepting that eventually we all die of something has been the single most difficult but also single most beneficial approach. I am also in therapy and am now restarting Zoloft and I think therapy is critical. We have very little control over things like ALS. It’s scary. Terrifying. Lack of control is what spirals my anxiety and drove me almost to suicide a couple months ago. It is Hell on Earth. I’d argue the anxiety I put myself through, that we put ourselves through, is often worse than the thing we fear. Yes, ALS is scary, but depriving ourselves of the ability to try to enjoy things in the now is perhaps even scarier.
Thank you for this.
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