ALS/MS scare- terrified!

[its1111]

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]

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]

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

[its1111]

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.

[Murphy93]

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]

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!

[its1111]

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..

[HelloPanda23]

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..

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!

[its1111]

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]

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.