View Full Version : ALS/MS scare- terrified!
Hi all,
So I have been dealing with muscle twitching for almost a year now. It started in my nose, moved to my eye, and now to my legs and stomach at rest. I broke down and went to the doctor today, and he sent me for a big blood work up for autoimmune and neurological disorders. My right leg has been feeling weak as well.
I wasn’t concerned about ALS until I just read an article that a man was diagnosed after only having twitches all over his body. No other symptoms until the disease eventually progressed. This has me TERRIFIED. From what I thought, ALS had many other symptoms, even at the beginning of the disease. Based on this man’s experience, that is not true.
I am so scared now. Please help.
Do you have any other symptoms? Did you push your doc for a blood test? I’m surprised your doc actually gave you a requisition for blood work as most know twitching, especially generalized twitching is a tell-tale sign of anxiety.
I had the leg weakness too. Twice! Both during brain tumour scares. And trust me it actually felt like my right leg had to be “ordered” to move. It was so weird.
Don’t be scared. You will be okay :) It’s not ALS
Thank you for your reply. Yes, I had blood work and he said he will most likely send me to a neurologist or rheumatologist next, depending on the results. He did a bunch of small in-office Neuro tests for strength and reflexes, and said it was ok, but obviously there are more tests that can be done. I am concerned because the twitches started long before the anxiety did.
Also, I forgot to mention, I can basically self-induce the twitches in my face. If I close my eyes tight, it goes crazy, then stops.
Sorry, I’m just super worried...
Don’t be sorry. It sounds like your doc is just giving in to your fears and ordering unnecessary tests. Most good docs won’t give in to these things. My doc refuses any kind of unnecessary tests and absolutely recognizes that I have health anxiety. Instead she chooses to talk to me and reasons with me. I don’t know what yours is like. But from what I’m reading he is very okay with causing you undue anxiety and sending you for testing. Especially with an issue that you have admitted you can control yourself.
Honestly, I very much downplayed the severity of the twitches because I know he can overreact. They did start before I had any anxiety (I think they have created it). They eye is the only one I can force to happen. The rest are random and constant. I requested bloodwork first and he very much jumped to neurologists following. He tends to be the kind of doctor to test like crazy, but he did seem somewhat concerned that I’ve been twitching for so long and nothing has stopped it. I had avoided going to the dr because I didn’t want to find out what it was..
Thank you for your help. It’s just nice talking to someone.
Well my blood work came back great, inflammation (CRP and CK) and magnesium are fine. He said he still wants to send me to a neurologist, possibly. Does this sound like BFS? I have to say I am relieved in a way, but still wondering what it could be.
Forgive my multiple posts on this- I didn't get many responses to my last one, so trying again. I'm kind of freaking out here.
Before you ask, yes, I have made an appointment to get help with my HA relapse... I just need to talk it out first.
So I have been twitching basically since January...started with my nose, then eye, and then widespread all over my body. It literally hasn't let up since. I finally broke down and saw my doctor, who ran blood work: Inflammation, Thyroid, Magnesium, etc. Everything came back fine.
While I was at the appointment, he did a bunch of in-office neuro tests- strength, smiling, reflexes, etc. He said they seemed fine. BUT... he said no matter what the outcome of the blood work, he would send me to a neurologist because he thinks something is causing the twitches.
Now before you say something again, these twitches started well before this new bout of Health Anxiety...I was not anxious, overly stressed, etc. Well of course, now I am!! I asked, "Since I have been twitching this long, I assume something like ALS could be ruled out since I don't have many other symptoms?" He wouldn't answer me and said, "I think it's a good idea to see a Neurologist."
So now I have to wait forever to even get in... I'm twitching like crazy, and going crazy all at the same time! I know there are other things that can cause twitching, including BFS, but my doctor is really scaring me by his lack of response and urgency for me to see a neuro. I have read numerous scary ALS articles online (bad idea, I know...) and many have started with simple body twitches.
Please, offer any opinions on what this could be (other than I need to get my anxiety in check now...I'm fully aware :))
nomorepanic
07-08-19, 17:41
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Please read THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) as many times as you need to.
Positive thoughts
Thanks, Fishmanpa. I had a feeling I’d be getting that from you :)
I have read it- I guess my doctor just really worried me more than anything. From what I’ve read on here, most would chalk it up to anxiety and move on- he is very adamant about me getting a bunch more tests, etc.
Yourboymj99
07-08-19, 20:05
Hi 1111,
Muscle fasiculations are not an indicator of any motor neuron desease. Muscle function failure is what a neurologist will look for when attempting to evaluate if any MND is a possibility. When a muscle twitches in an ALS patient it is due to motor neurons being destroyed from a loss of nourishment. Simply put, by the time a patient would notice this(sometimes they don't) the affected muscle would not function. Before this they would usually have already noticed troubling symptoms. Example, dropping small objects repeatedly, inability to grip a fly swatter or falling down unexpectedly ect. In a few individuals they will first notice slurred speach. Think of trying to talk while holding your tongue, others would certainly notice. Without elaborating more, it's safe to say this doesn't sound like you. Last thing, stop reading about outlier cases online. Details are always missed and left out. I didn't get a degree from Google, neither did any practicing physician anywhere else. If you don't already, try some moderate exercise. Stretch and stay hydrated(very important) and get plenty of sleep.
Take care
EmmerLooeez
07-08-19, 21:03
Hey,
I can't answer your questions re: ALS, etc. Except that I too get twitching, although it doesn't sound to be as severe as yours is. Mine is under or over my eyes and random places in my body, sometimes legs, fingers, stomach. I've never paid it too much attention though.
What I can sympathise with is your doctor. I went for an ECG once and my doctor sent me up to the hospital in an ambulance! The paramedics didn't see why he thought it was so urgent, the consultant cardiologist said the same, he was completely over-reacting. I was such an anxious mess over that. The same doctor.. I went to because my voice had been hoarse for a while and he ordered me a chest X-ray to check for a type of lung cancer for some reason! He made me so much worse. I'd perhaps have a chat with your doctor about his approach and consider getting a second opinion, I honestly feel like another doctor might not be so concerned. However, perhaps seeing a neurologist will help you to move past this panic.
Sending love. xx
Thanks all. I know reading online is bad... I have just seen so many stories of ALS starting with just body twitches, even though many sites say twitches come later. I am going to stop reading these, clearly it’s not helping.
I just keep thinking, what if it is ALS? I have a young child and family and couldn’t bear the thought of it. It’s just SO hard for me to imagine anxiety is causing this, especially since it started before the anxiety did. I am also experiencing big jerks in my stomach and legs as I fall asleep.
I am just really struggling right now.
Your boy this has helped me massively tonight you have no idea ! You always put things into perspective - 8 months of wide spread on and off twitching and aching muscles and my minds out of control! Trying to get back on track
HelloPanda23
09-08-19, 07:32
Hi all,
So I have been dealing with muscle twitching for almost a year now. It started in my nose, moved to my eye, and now to my legs and stomach at rest. I broke down and went to the doctor today, and he sent me for a big blood work up for autoimmune and neurological disorders. My right leg has been feeling weak as well.
I wasn’t concerned about ALS until I just read an article that a man was diagnosed after only having twitches all over his body. No other symptoms until the disease eventually progressed. This has me TERRIFIED. From what I thought, ALS had many other symptoms, even at the beginning of the disease. Based on this man’s experience, that is not true.
I am so scared now. Please help.
You can’t know if you have ALS until you actually find yourself having difficulty doing normal tasks; for example holding a cup or standing on one foot for even a second. None of the symptoms you mentioned are directly related to ALS. I had the same fears and suffered because of it a year ago. I literally spent my days reading about ALS and how to avoid it, and in all honesty, I had no life. Don’t waste your time trying to find problems where they don’t exist. If you have muscle atrophy or difficulty completing normal tasks, then you should worry. Believe it or not, there are no warning signs for ALS. This may surprise you, but that’s the truth. Every normal person deals with twitches and muscle cramps, but they don’t get ALS, so what makes you think your twitches are because of ALS? Your fear right? You read about ALS being a terrible disease and now you attribute every symptom to it, it’s how anxiety and irrational thoughts work. You just have to accept the fact that there’s a chance for you to get this disease, and move on with your life. It’s the #1 reason why people are debilitated by health anxiety, they want to confirm they 100% don’t have and never will get the disease thats haunts them. “How can you live comfortably knowing you can wake up one morning without the ability to control your leg?” This is the thought process that needs changing, from this, go to, “Well, there’s a very rare possibility that I can wake up and have no control of my leg, but I’m going to enjoy my life instead of worrying about that. If it happens, I’ll deal with it then.” I highly encourage you to expose yourself to your fears until there’s no emotion attached to them. Until then, I wish you the best of luck! :)
Thank you for your replies. I don't know if anyone is still reading this... but I appreciate the comments. I think I have just gotten way too deep in an anxiety pit because of this, and I can't get out of it. To top it all off, the Neurologist is booking appointments up to 6 months out no matter the case, so I am so upset I have to wait this long. My twitching is really bad right now, I am assuming the anxiety is not helping it... and I seem to have lost some strength in my right side..my arm and leg feel much weaker than normal (I keep trying to tell myself the mind can create so many symptoms, hopefully this is one of them). I dropped something with my right hand this morning and about lost it... I was given ativan for the anxiety, but I also don't want to become dependent on it.
I honestly don't know if I can handle six more months of this... I am going to try to see if I can get on a cancellation list or something. Right now, I am sadly praying all of this is just in my head. The arm and leg weakness has just made me snowball.. :weep:
HelloPanda23
14-08-19, 05:41
Thank you for your replies. I don't know if anyone is still reading this... but I appreciate the comments. I think I have just gotten way too deep in an anxiety pit because of this, and I can't get out of it. To top it all off, the Neurologist is booking appointments up to 6 months out no matter the case, so I am so upset I have to wait this long. My twitching is really bad right now, I am assuming the anxiety is not helping it... and I seem to have lost some strength in my right side..my arm and leg feel much weaker than normal (I keep trying to tell myself the mind can create so many symptoms, hopefully this is one of them). I dropped something with my right hand this morning and about lost it... I was given ativan for the anxiety, but I also don't want to become dependent on it.
I honestly don't know if I can handle six more months of this... I am going to try to see if I can get on a cancellation list or something. Right now, I am sadly praying all of this is just in my head. The arm and leg weakness has just made me snowball.. :weep:
Ok, you’ve got this disease completely wrong. ALS weakness isn’t your casual weakness that you feel, ALS as a whole isn’t a disease that makes you feel anything. What actual ALS weakness is, is clinical weakness. Put into more simple terms, if you had clinical weakness, you wouldn’t feel it but rather you’d lose your ability to move the muscle that is weak. Your symptoms are simply anxiety. Another thing is, if you drop something from your hand, and it truly is caused by ALS, then that means you can’t ever hold anything with your hand again. If you try to hold anything with that hand again, it will logically fall again. Think of it like this, ALS takes away your ability to use parts of your body, and so if you lost your ability to grip things properly, then that would remain permanently, and progressively get worse. Look, you have terrible health anxiety and I advise you to expose yourself to the fear of actually getting ALS until you eventually get over it. You need to understand that you can get fatal diseases, and that’s a normal part of life.
I’m going to have to be as harsh as possible here to ensure that you get yourself back into the real world.
If people constantly wasted their time trying to ensure themselves that they wouldn’t die in the near future; there would’ve been no point to all there troubles because not only would they drive themselves sick, but they’d also stop living. The constant 24/7 fear debilitates people and makes their day to day lives awful; trust me I’ve gone through the same thing. Now if we’re talking logically and you do have ALS, then that’s basically a death sentence. What difference would that make? There’s no cure for ALS, and so if in the worst case scenario you did have ALS, wouldn’t you rather treasure every moment till your death instead of ruining it by symtpom checking, dreading what might happen, and etc? You want to get checked to give your mind some peace, but it’ll get worse. 3 months later you might find yourself with “symptoms” of ALS again, and then you’d want to get checked up again because you want a peace of mind again. This will continue on until you literally lose thousands of dollars and hours to the ALS rabbit hole. Learn to live with your fear, and trust me, you’ll get better. Another thing I’d like to add is, I think that people who have health anxiety are usually the ones who have a lot of spare time and little things to worry about in their life. Whenever I get actual important things to take care of in my real life, I usually forgot about health anxiety. So what I’m saying is, put your energy into things that will both make you a better person and also benefit you heavily, instead of constantly wasting it on irrational thoughts. Good luck, and please, listen to this reply and consider it. I’ve wasted a good amount of my time to help you out with this post, but if you just read it and discard the information I gave you, and literally post 2 days later with a new symptom, I’d feel offended. I’m deeply sorry but if this post doesn’t help you, then I highly recommend you make huge lifestyle changes, along with getting a doctor to aid you in suppresing your anxiety. Your money is better spent on treating your anxiety than on making it stronger. Best of luck! :)
Thank you, Panda, for this message. Tough love is needed sometimes.... I do appreciate you taking the time to respond. As you probably know, the health anxiety hole can really take a toll- you said you have experienced it yourself. Normally I do not get this bad, but because I am twitching 24/7, I am constantly aware something is not right, you know what I mean? And yes, I do feel worse when I have more free time..but honestly, I am so busy right now with work, kids, family, etc.... So it's even breaking through that.
I will feel better once I am able to see a Neuro-- It is ridiculous to me that they are making people wait over 6 months to be seen.
I am doing my best to convince myself that my arm and leg weakness is due to tension and stress from worrying. I am also trying to convince myself that because I have been twitching for about 8-9 months, I would be in much worse shape now if it was ALS. But sometimes the worry gets the better of me.
I have an appointment to meet with a psychologist- but once again, I can't get in for a month. Thanks again for your help.
HelloPanda23
14-08-19, 14:59
Thank you, Panda, for this message. Tough love is needed sometimes.... I do appreciate you taking the time to respond. As you probably know, the health anxiety hole can really take a toll- you said you have experienced it yourself. Normally I do not get this bad, but because I am twitching 24/7, I am constantly aware something is not right, you know what I mean? And yes, I do feel worse when I have more free time..but honestly, I am so busy right now with work, kids, family, etc.... So it's even breaking through that.
I will feel better once I am able to see a Neuro-- It is ridiculous to me that they are making people wait over 6 months to be seen.
I am doing my best to convince myself that my arm and leg weakness is due to tension and stress from worrying. I am also trying to convince myself that because I have been twitching for about 8-9 months, I would be in much worse shape now if it was ALS. But sometimes the worry gets the better of me.
I have an appointment to meet with a psychologist- but once again, I can't get in for a month. Thanks again for your help.
No problem, but since I’ve gone through the same fear for 1-2 months, I’ll try and help you get over it again, because I know how consuming it can be. Twitching in ALS is the last symptom, as it’s caused much after you’re paralyzed and can’t move. Your twitching is something very common in people with health anxiety, benign fasciculation syndrome. Look, if you can stand on one leg, and complete your day to day tasks, then you don’t have ALS and you’re wasting a lot of money; last I heard it was $400 to get checked for ALS, maybe even more. The twitching some people experience before ALS isn’t caused by ALS, but rather by things like working out, being stressed out, and etc. People who get ALS sometimes assume that the twitches they had prior to the onset of the disease is related to ALS, but it’s not. Look, when you go to your neurologist, he/she is going to test to see if you can stand on one foot, if you can grab and hold certain things, and other simple things of that sort. After that, he’ll say that you don’t have ALS, and that it’s a waste of money to get an EMG. I however, believe you’ll force them for the EMG, of which is both painful and pricey. After this, you’ll feel confident until out of nowhere your symptoms get worse, and then you start to think your neurologist made a mistake while doing the EMG. This has happened to so many people in the ALS rabbit hole, and the only way to get over it is to either accept the possibilities of getting ALS, or lose of the fear as a whole. I’ve done both, and I’ve done it without any medical help. If I can do it, you can too. If you truly believe you need the EMG or the check up with the neurologist, then so be it, but in my opinion, it’s pointless because as I said even in the worst scenario, in which you do have ALS, it makes no difference to find out early, as the disease has no cure. Best of luck.
No problem, but since I’ve gone through the same fear for 1-2 months, I’ll try and help you get over it again, because I know how consuming it can be. Twitching in ALS is the last symptom, as it’s caused much after you’re paralyzed and can’t move. Your twitching is something very common in people with health anxiety, benign fasciculation syndrome. Look, if you can stand on one leg, and complete your day to day tasks, then you don’t have ALS and you’re wasting a lot of money; last I heard it was $400 to get checked for ALS, maybe even more. The twitching some people experience before ALS isn’t caused by ALS, but rather by things like working out, being stressed out, and etc. People who get ALS sometimes assume that the twitches they had prior to the onset of the disease is related to ALS, but it’s not. Look, when you go to your neurologist, he/she is going to test to see if you can stand on one foot, if you can grab and hold certain things, and other simple things of that sort. After that, he’ll say that you don’t have ALS, and that it’s a waste of money to get an EMG. I however, believe you’ll force them for the EMG, of which is both painful and pricey. After this, you’ll feel confident until out of nowhere your symptoms get worse, and then you start to think your neurologist made a mistake while doing the EMG. This has happened to so many people in the ALS rabbit hole, and the only way to get over it is to either accept the possibilities of getting ALS, or lose of the fear as a whole. I’ve done both, and I’ve done it without any medical help. If I can do it, you can too. If you truly believe you need the EMG or the check up with the neurologist, then so be it, but in my opinion, it’s pointless because as I said even in the worst scenario, in which you do have ALS, it makes no difference to find out early, as the disease has no cure. Best of luck.
Hello panda
Your last two posts have been amazing honestly put me in to touch which is just what I needed !!
29 year old female twitching for 8 months and have lived my life down this hole for the whole time! I’ve been miserable and convinced myself I have it .
8 months down the line I’m still here - still standing on one leg still walking and doing my job.
Thanks for the tough love hoping I’m coming to the end of the tunnel
Hello panda
Your last two posts have been amazing honestly put me in to touch which is just what I needed !!
29 year old female twitching for 8 months and have lived my life down this hole for the whole time! I’ve been miserable and convinced myself I have it .
8 months down the line I’m still here - still standing on one leg still walking and doing my job.
Thanks for the tough love hoping I’m coming to the end of the tunnel
Agreed- thank you. Murphy, you and I sound like we have similar issues. I've been twitching for about 8 months too. I honestly didn't let it bother me too much until I saw my doctor and he freaked me out!!! Maybe we can support each other...the rabbit hole really sucks lol
Agreed- thank you. Murphy, you and I sound like we have similar issues. I've been twitching for about 8 months too. I honestly didn't let it bother me too much until I saw my doctor and he freaked me out!!! Maybe we can support each other...the rabbit hole really sucks lol
I know!! I think deep down somewhere we know were actually okay as 8 months is a long time! If you ever need to talk to anyone I’m always here to listen! I know how lonely it can feel
HelloPanda23
15-08-19, 01:32
I’m glad my posts helped; nobody deserves to go through the constant fear that they might die because of an awful disease, and so I really hope you guys get better from here on out! :)
So I had a Neuro appointment for my twitching that has been going on for 8-9 months.
He did the standard questions, neuro exam, etc. He was very young, but told me his fellowship was in ALS and muscle disease. I passed the Neuro test and he said my reflexes were fine.
Anyway, I basically told him my biggest fear was ALS. He said well, I am going to do an EMG/NCS, to rule it out and other bad things. But even if it is ruled out, I want to see you throughout the year. He said I don’t think it would progress to ALS... but that’s what the study is for.
He also told me that he has twitching and has done tests on himself for ALS...
I’m not sure if all this makes me feel better or not?? It’s almost like I wanted him to be like ok, there is a 99% chance you don’t have this, so stop worrying. But he didn’t... are doctors not allowed to say things like that due to liability, etc? Did he say as much as he could?
Thanks for the feedback. Helps talking it out.
That appointment sounds unnecessarily unreassuring! Are they doing a research project? That seems a little odd, as I would’ve thought research into the link between twitching and progression to ALS would need data from a very large sample population. Because if the link is there at all, we know it is TINY- since so far the evidence suggests there is no connection between benign twitching (twitching with no clinical weakness) and future ALS. I went to a neurologist once and she said she had never once seen benign twitching progress to ALS in her entire career. So- 99% chance you don’t have ALS is a severe over estimation (if 1 in a 100 apparently benign twitchers went on to develop ALS the link would be EXTREMELY OBVIOUS). It’s more like a 99.99999% chance you don’t have it.
Thank you for this. I agree, I was wondering about the research myself. I do have some right arm weakness after repetitive use, but it’s not all the time. The only thing I can think is because he is fairly new, he won’t give me a definitive answer until after the EMG? I mean he did say it’s unlikely it would be that because it is a progressive disease, but the EMG will give us a better understanding of what’s going on. And that it could be BFS or something else. Either way, I guess I was just hoping for him to be like.. look, you don’t have this. Stop worrying. Ya know?
Has ANYONE experienced this?? Trying to figure out if this is anxiety or medically related:
For the past couple of weeks I have been suddenly awakened (always very early in the morning) by what feels like my bed is shaking or vibrating. At first, I would sit up to see if my cat was doing it or something was causing it, but the cat wasn’t there. As it has happened a few more times, I am realizing it is like my body is vibrating from head to toe on the inside. As soon as I fully wake up and move, it stops. It is the FREAKIEST feeling!!!
Has anyone ever had this??? I am currently being tested for a number of neuro isssues, so it frightens me that this could be another symptom. I unfortunately read that many people with MS experience this, but I am hoping maybe it could be anxiety if someone else has had it happen?
Omg!!!!! I HAD to comment on this because I went through something similar in my teen years. I didn’t have health anxiety at the time so didn’t really care or ponder on why it was happening. I remember wondering if it was something supernatural? Looool. But now that I’m older and I read your comment, I couldn’t help but connect it to my experiences as a teen. I would say about 10 to 12 years ago. And I remember sometimes it would feel like pretty clear vibrations. Anyway, it has gone now. why are you undergoing neuro tests? I can’t imagine this being neuro related.. always thought seizures were something that happened unconsciously so it can’t be that
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
I have been having muscle twitching since January, so they are testing me for all kinds of things, which freaks me out. Especially since this started!!! I think it could be anxiety related because I had it happen like 3 times last night, but I was so worried about it when I went to sleep. It’s the creepiest feeling. I’m glad to know someone else has experienced it!
Did you ever get any answers on what was causing the twitches. I've had it three months now and it's driving me mad. No other symptoms. Just twitching. Mainly in my legs.
I had an EMG last week and it came back fine. He diagnosed me with BFS and basically said I’ll probably have to just deal with it, but it may go away. He is going to do a follow up in a few months, but I’ve been twitching for almost a year and don’t really have any other symptoms that makes him think it’s anything worse.
That's good news. I totally get that's it's annoying. I feel your pain. But like you I have no other symptoms. My legs do feel a little "odd" at times. But not weak as such. I'm probably just imagining this thought.
Glad your EMG all went well.
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