Another twitcher worried about ALS :(

[Dentalmaniac]

New to this forum, but not new to HA by any means. Have had multiple stints of heart health fear and cancer fears for the last 18 plus years. None have been as devastating as this latest rabbit hole of ALS.

Started with a few twitches behind my shoulder for some time and I looked up dr. google. As i was looking up I was telling myself not to....but alas :( As soon as I came across ALS I thought well now just because of what I've read, I'm sure I'll start twitching all over....sure enough that followed.

Started feeling my left arm wasn't as strong as my right now and started doing all sorts of tests. Started doing dumbells with my left arm and sure enough couldn't do as many with left as I could with right (am right handed), so perhaps should not have been a surprise.

All this started two and a half months ago. I have been twitching all over all this time. About three weeks ago, my husband said well you talk about twitching all over and i do see this weird sensation on your chin....well sure enough i look in the mirror and see my muscle twitching right under my lip. this twitch i wasn't even feeling and it was twitching non stop. That went on for a week and then stopped itself. i was happy but then I noticed a weird sensation in my gums and sort of felt like my ear and jaw were getting tight. i get this feeling all throughout the day on and off. Well a couple of days ago, I started feeling like I'm slurring and now there's no way I can calm myself down :( I'm desperate and just looking for some reassurance from someone who has experienced all this. Scared beyond words at this time!

[2anxious4this]

Hi im dealing with an ALS fear as well. I get teitches all over but mainly my right leg. Ive read that anxiety can cause these symptoms and my doctor has confirmed that as well, although its hard to accept due to anxiety. Anxiety can cause perceived weakness, which is where it might feel weak, but it truly isnt. Have you seen a doctor?

[fidgetninja]

Hi Dentalmaniac - have you check out the posted sticky on why you don't have ALS? Might be helpful! I'm often twitching, and yes, have also managed to convince myself that my speech was slurring (it's not - you're just over thinking it). As I've seen around the forum, ALS is about failing, not feeling. This is from an ALS Support page:

"ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work."

So the fact that you maybe can't do as many exercises on your left side is not indicative of ALS.

This is also from the page:

"If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease.. "

Your twitching is not ALS - it could be anxiety, stress, vitamin deficiency, etc. I twitch all the time and I don't have ALS.

The ear and jaw have lots of tiny muscles around them that tighten and constrict when anxious and I highly suspect that is the "tight" feeling you feel. Happens to me quite frequently. :)

[Kingdawson]

Near enough every human in the world twitches. Previously i was scared of it but now I rarely think about it. My body wide random twitches coincides with my health anxiety being really high AND gaining weight and bulking up quite considerably in the gym so I think a combination of the 2 but who knows.

[Dentalmaniac]

Hi all, thanks for your responses. I am a super anxious person and obsess over any symptom. My latest one today is my right arm at a very specific angle as I'm working on my computer just starts vibrating. I am hoping this is not an ominous sign!

[elasticheart83]

I’ve had ALS worries in the past too... I’m not sure how old you are but if you are younger than 45 it is almost impossible to get ALS and even more unlikely if you’re under 35. I don’t have the exact statistics but I remember reading somewhere that you are more likely to get hit by an asteroid than be diagnosed with ALS before middle age. It is also less common in women. And of course even if you are older it is still an extremely rare disease. I can totally empathize with your health anxiety though.

[Dentalmaniac]

Hi elasticheart I am past 45 now:( 48 to be exact. I am starting to really panic now! Will be making an appointment with my doctor soon. This has been going on for 3 months now.

[elasticheart83]

Hi elasticheart I am past 45 now:( 48 to be exact. I am starting to really panic now! Will be making an appointment with my doctor soon. This has been going on for 3 months now.

Still, you would be young for ALS and most sufferers are male. I still think it is extremely unlikely. Try not to worry about this very rare disease (I know it’s hard not to though, as we all here worry about unlikely diseases). Keep in mind that twitching is a very common stress/anxiety symptom. Let us know how everything goes. *hugs*

[Kingdawson]

Hi all, thanks for your responses. I am a super anxious person and obsess over any symptom. My latest one today is my right arm at a very specific angle as I'm working on my computer just starts vibrating. I am hoping this is not an ominous sign!

None of what you mentioned sounds anything like ALS.

[Fishmanpa]

Please read this (http://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you need to. You use the word "feeling" in your post and the simple fact that ALS is about "failing" not "feeling" blows this out of the water.

Positive thoughts

[Dentalmaniac]

Thank you everyone for your reassurances! Fishmanpa I will read the link you posted above again and again :) I think the thing that’s really getting me now is the slurring :( I feel I can’t say certain words fast enough...so what do I do? Keep saying tongue twisters ! Argh!!! Thank you all for your positive words....I am truly grateful!

[Fishmanpa]

I think the thing that’s really getting me now is the slurring :(

Unless people are asking if you're drunk, it's all in your head :winks:

Positive thoughts

[Dentalmaniac]

Nope people are not asking that yet, but I feel like I can't say certain sounds well especially if they're right after certain other ones. Almost have to give a lot of effort and therefore my speech is slow :( I guess time will tell!!! In the meantime, I will take all your positive responses and keep telling myself that my worry can't change anything. I hate this rabbit hole that I have gotten myself into :( Thank you all for listening to me!

[Andrash]

Nope people are not asking that yet, but I feel like I can't say certain sounds well especially if they're right after certain other ones. Almost have to give a lot of effort and therefore my speech is slow :( I guess time will tell!!! In the meantime, I will take all your positive responses and keep telling myself that my worry can't change anything. I hate this rabbit hole that I have gotten myself into :( Thank you all for listening to me!

Can you whistle?

[Dentalmaniac]

Yes I can whistle just fine. Why do you ask Andrash?

[Fishmanpa]

Can you whistle?

Good Question :yesyes:

Positive thoughts

[Andrash]

Yes I can whistle just fine. Why do you ask Andrash?

Because if you can whistle (and you can) you don't have ALS. Definitely. 100%.

[Dentalmaniac]

Now that made me smile :)

[Andrash]

Now that made me smile :)

That is the truth :) If you had bulbar onset ALS, the damage to your facial muscles would have made it completely impossible for you to whistle. No matter how hard you tried you would not have made a sound. Therefore, you 100% do not have ALS.

[Dentalmaniac]

Thank you Andrash for your reassurance. I had a better morning yesterday after reading your post but went downhill last night with a big tears blowout as we were out with friends for dinner last night followed by a really depressing wake up this morning. I feel like I need to make a doctors appointment but then am petrified if my fears come true :(

[callmeJ]

The twitches will not go away until your mind releases the fear. I went through this 3 years ago. After I read about ALS and was worried about it I felt a twitch in my leg. Not long after that I was having them all over. This sent me into a major episode. I went to the doctor and I was prescribed Paxil and clonozepam to help me sleep. I instantly was feeling better yet my mind still had ALS on it. Basically I continued twitching just not as bad while on the Paxil. I just wasn’t able to freak out about it or be scared. Finally after months went by I was becoming less and less preoccupied with it. Once the fear was gone the twitching eventually subsided completely but it took time.

[Dentalmaniac]

Just came back from my doctors and my level of anxiety has gone through the roof! Instead of giving me reassurance he said well your twitches are all throughout the body so I can’t say ifs a pinched nerve which means we have to rule things out. He did some strength tests only on my arms and said well your arms are equally strong. We may have do a brain MRI and then also refer you to a neurologist. He asked me if I knew what he was trying to rule out and if I had googled my symptoms and I lied and said no, not sure why. Then he went on to say let’s test your electrolytes and let’s go from there. So here I am really scared more than ever! I had gone thinking he’ll give me reassurance and say body wide twitching is very common and can be due to stress but he did no such thing:(

[Fishmanpa]

He knows full well that you know and you Googled :winks: IMO, he's practicing CYA medicine. That's the sign of a good doctor and let's be honest, if he had told you it was anxiety, you'd be posting that he must have missed something. I see it many times here. HA is a damned if you do, damned if you don't illness.

Positive thoughts

[Dentalmaniac]

I sure do hope that he was practicing CYA. If not, I would say he’s definitely made me much more anxious than I was going in :( he did not mention bfs at all which I thought he would bring up :(

---------- Post added at 04:52 ---------- Previous post was at 03:15 ----------

I really appreciate everyone being so patient and so reassuring to me on this forum. Thought I would list out my symptoms and their progression here:
1. Jan of this year while brooming in my mom’s house felt like my left arm got extremely tired. I rested and it got better. I usually don’t do any physical work.
2. Feb of this year, heard about three people; two distant acquaintances, one family friend who’ve been diagnosed by ALS
3. Feb my left elbow twitched for a day or so and so I googled and saw for some the first symptom of ALS may be a twitch. Didn’t think much of it as soon after my right elbow twitched a couple of times and that was that
4. Mid march, my daughter saw me walking towards her from a far and she asked me if I was limping. I said, no nothing hurts maybe you feel that way because I was walking fast and my feet were hurting in new shoes so maybe I was walking weird.
5. Also in march, I climbed up four flight of stairs at work and felt my left leg got really tired fast, so from that day on I started climbing stairs at work more regularly for a few weeks and seemed like my leg would not tire as fast as that first day. Maybe now I wasn’t climbing as fast.
6. End of march a couple of nights in a row I woke up because the back of my shoulder would twitch. That morning I was telling myself not too google but I ended up doing it and bam….there it was ALS. Thought to myself sure now I’m going to twitch all over and sure enough within a couple of hours I had a few twitches here and there and everything is history
7. For the last two and a half months now I’ve been twitching everywhere.
8. I read some more (a lot more) about ALS and started doing strength tests. Sure enough my left arm seemed much weeker than my right (I’m right handed). Decided to do everything from now on with my left hand. I think I’ve built more strength in it as it feels stronger than it was when I started doing strength tests
9. A month ago, my husband pointed out that he could see my chin underneath my lip twitching. I looked at the mirror and sure enough there it was. This was a twitch I had not even felt. Did more googling on ALS and sure enough found bulbar onset.
10. Next comes on slurring. For the last one week, I’ve felt like I can’t say certain words fast enough. I feel like my gums are tight. Almost as if I’ve gotten work done on my teeth
So went to the doctor today hoping he would reassure me and he says well, because your twitching is so non specific as in happens randomly everywhere I can’t say it’s because of a pinched nerve, so in this case we’ll have to do tests to rule things out….goes on to ask me if I’ve googled. I say no (not sure why). Asks me if I feel week or pain in my legs, I say no (even though thinking in my head, I do feel pain in my legs when I get up after a while). He does a few strength tests on my arms and tells me wooo you’re strong when I squeezed his fingers and then makes a comment that strength in my arms seems equal. He recommended brain MRI and that’s his way of ruling things out and he mentioned also I will recommend you see a neurologist. At that point my husband pointed out don’t you want to test her electrolytes and he said yes, we can do some blood tests to see if there’s any deficiency. Needless to say, I’m thinking the doctor’s thinking what I’m fearing all along!!!! Fishmanpa thanks for your reassurance that you think he’s catering to my health anxiety and being a good doctor. I’m hoping beyond hope that is the case!

[Kingdawson]

I sure do hope that he was practicing CYA. If not, I would say he’s definitely made me much more anxious than I was going in :( he did not mention bfs at all which I thought he would bring up :(

---------- Post added at 04:52 ---------- Previous post was at 03:15 ----------

I really appreciate everyone being so patient and so reassuring to me on this forum. Thought I would list out my symptoms and their progression here:
1. Jan of this year while brooming in my mom’s house felt like my left arm got extremely tired. I rested and it got better. I usually don’t do any physical work.
2. Feb of this year, heard about three people; two distant acquaintances, one family friend who’ve been diagnosed by ALS
3. Feb my left elbow twitched for a day or so and so I googled and saw for some the first symptom of ALS may be a twitch. Didn’t think much of it as soon after my right elbow twitched a couple of times and that was that
4. Mid march, my daughter saw me walking towards her from a far and she asked me if I was limping. I said, no nothing hurts maybe you feel that way because I was walking fast and my feet were hurting in new shoes so maybe I was walking weird.
5. Also in march, I climbed up four flight of stairs at work and felt my left leg got really tired fast, so from that day on I started climbing stairs at work more regularly for a few weeks and seemed like my leg would not tire as fast as that first day. Maybe now I wasn’t climbing as fast.
6. End of march a couple of nights in a row I woke up because the back of my shoulder would twitch. That morning I was telling myself not too google but I ended up doing it and bam….there it was ALS. Thought to myself sure now I’m going to twitch all over and sure enough within a couple of hours I had a few twitches here and there and everything is history
7. For the last two and a half months now I’ve been twitching everywhere.
8. I read some more (a lot more) about ALS and started doing strength tests. Sure enough my left arm seemed much weeker than my right (I’m right handed). Decided to do everything from now on with my left hand. I think I’ve built more strength in it as it feels stronger than it was when I started doing strength tests
9. A month ago, my husband pointed out that he could see my chin underneath my lip twitching. I looked at the mirror and sure enough there it was. This was a twitch I had not even felt. Did more googling on ALS and sure enough found bulbar onset.
10. Next comes on slurring. For the last one week, I’ve felt like I can’t say certain words fast enough. I feel like my gums are tight. Almost as if I’ve gotten work done on my teeth
So went to the doctor today hoping he would reassure me and he says well, because your twitching is so non specific as in happens randomly everywhere I can’t say it’s because of a pinched nerve, so in this case we’ll have to do tests to rule things out….goes on to ask me if I’ve googled. I say no (not sure why). Asks me if I feel week or pain in my legs, I say no (even though thinking in my head, I do feel pain in my legs when I get up after a while). He does a few strength tests on my arms and tells me wooo you’re strong when I squeezed his fingers and then makes a comment that strength in my arms seems equal. He recommended brain MRI and that’s his way of ruling things out and he mentioned also I will recommend you see a neurologist. At that point my husband pointed out don’t you want to test her electrolytes and he said yes, we can do some blood tests to see if there’s any deficiency. Needless to say, I’m thinking the doctor’s thinking what I’m fearing all along!!!! Fishmanpa thanks for your reassurance that you think he’s catering to my health anxiety and being a good doctor. I’m hoping beyond hope that is the case!

I think you're over thinking things to be honest. Why do you assume the doctor is referring to ALS? A brain MRI is not even the standard test for ALS so he is obviously not even concerned about that (the strength test ruled that out).

The questions he has asked makes me think he is trying to rule out MS not ALS(which probably isn't even in his radar).

---------- Post added at 09:43 ---------- Previous post was at 08:51 ----------

Btw you have been twitching for 3 months and the doc has reassured you that you have no weakness. When are you going to call it quits and accept you do not have ALS?

[Dentalmaniac]

Update....was feeling much better mentally yesterday but then got report back from my doctor that all of my blood tests/electrolytes came back normal so he wants me to see a neurologist:( back to being panicked and stressed!!!

[Kingdawson]

Update....was feeling much better mentally yesterday but then got report back from my doctor that all of my blood tests/electrolytes came back normal so he wants me to see a neurologist:( back to being panicked and stressed!!!

Do you understand that the doctor suggesting an MRI scan pretty much confirms he doesn't even suspect AlS? And your strength test ruled that out? I mean do you get that??

[Dentalmaniac]

Hi Kingdawson, yes that gives me reassurance and hope. Thank you for being the voice of sanity and logical reasoning:)

[hope_girl]

What about not going to the neurologist? I mean - if it's ALS (which is clearly is not), there is no treatment anyway! Your Dr. is covering their A$$. They all do it. It's basic American healthcare. Loads of unnecessary tests. I've had plenty.



I've been twitching since Feb. By this point I would have weakness if I had ALS. I don't. I never made an appointment with the Dr. because of course they always send you on to a specialist when they don't have clear answers. But I reasoned with myself that it would make no sense to rush off to the Dr. because unlike cancer where you hope to catch it early, it doesn't matter with ALS. There's nothing you can do. Catching it early literally does nothing.



So instead, I have used these past few months to focus on my therapy. I definitely ran to my therapist with it and it has helped me SO MUCH. I have made friends with my anxiety this time. I knew there would be no quick fix. Running to the Dr. never REALLY eases my mind - what if they missed something?! Having unnecessary tests surely has never done anything but cause MORE anxiety, which fuels MORE anxiety symptoms and keeps the snowball growing. This time I decided to stay put and stay away from it all. It seemed like the perfect setting for me to work with my health anxiety on my own without the (ritualistic behavior) of running to the doctor.


So far, so good. I've gained so many great techniques and understandings because I've taken advantage of this time. That's not to say I haven't suffered because I have. But I've also made this my "frienemy" if you will. I've been able to learn so much from it that I wouldn't have learned had I continued in the same pattern as before (run to Dr., tests or what have you, find out it's nothing... move on to next thing!)


There's no way you have ALS. But you do have anxiety. Focus on that and you will get better. My twitching isn't scaring me anymore thanks to the therapy I've been receiving. It is not totally gone but it's diminished and I'm accomplishing so much in terms of anxiety.

[HelloPanda23]

What about not going to the neurologist? I mean - if it's ALS (which is clearly is not), there is no treatment anyway! Your Dr. is covering their A$$. They all do it. It's basic American healthcare. Loads of unnecessary tests. I've had plenty.



I've been twitching since Feb. By this point I would have weakness if I had ALS. I don't. I never made an appointment with the Dr. because of course they always send you on to a specialist when they don't have clear answers. But I reasoned with myself that it would make no sense to rush off to the Dr. because unlike cancer where you hope to catch it early, it doesn't matter with ALS. There's nothing you can do. Catching it early literally does nothing.



So instead, I have used these past few months to focus on my therapy. I definitely ran to my therapist with it and it has helped me SO MUCH. I have made friends with my anxiety this time. I knew there would be no quick fix. Running to the Dr. never REALLY eases my mind - what if they missed something?! Having unnecessary tests surely has never done anything but cause MORE anxiety, which fuels MORE anxiety symptoms and keeps the snowball growing. This time I decided to stay put and stay away from it all. It seemed like the perfect setting for me to work with my health anxiety on my own without the (ritualistic behavior) of running to the doctor.


So far, so good. I've gained so many great techniques and understandings because I've taken advantage of this time. That's not to say I haven't suffered because I have. But I've also made this my "frienemy" if you will. I've been able to learn so much from it that I wouldn't have learned had I continued in the same pattern as before (run to Dr., tests or what have you, find out it's nothing... move on to next thing!)


There's no way you have ALS. But you do have anxiety. Focus on that and you will get better. My twitching isn't scaring me anymore thanks to the therapy I've been receiving. It is not totally gone but it's diminished and I'm accomplishing so much in terms of anxiety.

Had the fear for 2 months, combined with many aches and pains. No twitches though. I considered going to a dcotor, but never did because I realized it'd be a waste of money and time. Just as you said, there's no reason to check and see if i have ALS or not because if I do, it'd make no difference anyway.

[Dentalmaniac]

Hope girl and hellopanda23, that’s exactly why I had refrained from heading to the doctors for over two and a half months otherwise I’m usually very doctor happy each time I’m anxious about a symptom. I’m going to refrain from going to the neurologist As both of you said no benefit of it. Trying to keep positive thoughts. Thank you both for your messages ����

[Dentalmaniac]

So one of the symptoms of ALS that I’ve read is extreme emotions....and that scares me even more as in the last month, I’ve had at least two emotional breakdowns in settings I would never do that in. These are situations I got tears eyes and choked at. I hope it was just my anxiety and nothing else but I can’t shake off this fear! :(

[HelloPanda23]

So one of the symptoms of ALS that I’ve read is extreme emotions....and that scares me even more as in the last month, I’ve had at least two emotional breakdowns in settings I would never do that in. These are situations I got tears eyes and choked at. I hope it was just my anxiety and nothing else but I can’t shake off this fear! :(

Don't worry about that, it happens late in the disease. This means that you'd have to have at least one of your limbs completely disabled for this to even happen. Either way, without a disability, that part of the disease can't be affecting you.

[Andrash]

So one of the symptoms of ALS that I’ve read is extreme emotions....and that scares me even more as in the last month, I’ve had at least two emotional breakdowns in settings I would never do that in. These are situations I got tears eyes and choked at. I hope it was just my anxiety and nothing else but I can’t shake off this fear! :(

These are emotional breakdowns caused by anxiety. Emotional lability in neurological disorders is different - for example, you laugh in an extremely sad situation or you cry in a funny one.

[Fishmanpa]

Please read this (http://www.nomorepanic.co.uk/showthread.php?t=196071) as often as you need to. You use the word "feeling" in your post and the simple fact that ALS is about "failing" not "feeling" blows this out of the water.

Positive thoughts

[hope_girl]

I wanted to share another strategy I’ve picked up in therapy. Choose a time of the day to worry about your ALS fears. Say 6pm. Whenever you have that intrusive thought, “this could mean I have ALS” or “that twitch I just felt probably means I’m dying” or whatever bad message you get, respond with: “I’m not going worry about that now or think about it. I’ll do it later at 6pm”. When 6pm comes, take a moment to worry. It’s funny because you aren’t triggered by anything, only reminding yourself that it’s “worry time” and If you’re like me it suddenly isn’t scary. Well, then you take 10 min and do your worrying and move on. If you have another fear thought respond with “I’ve already worried about that today, I’ll worry about it tomorrow at 6pm”. It sounds simple but I’ve found it highly effective. That means you just IGNORE any more twitches or perceptions of weakness. Yes. Ignore. And put off the worry. Has helped me tons.

---------- Post added at 20:54 ---------- Previous post was at 20:51 ----------

Meant to say this in my post above but I have found that this strategy gives me my life back. It takes my anxiety down in a massive way. Less anxiety = less symptoms = less anxiety. But be warned; physical anxiety symptoms take time to go away. Your body has been revved up TIGHT and takes time to go back to normal.

[Dentalmaniac]

Thank you so much to all for your responses! This forum has been the lifeline to keep my sanity during this time of stress, panic and worry. I come back to read your reassurances multiple times every day. Thank you thank you for your kind words!! I hope to one day be able to come back and tell others that I went through this scare but that it was all in my head!

---------- Post added at 17:42 ---------- Previous post was at 16:15 ----------

So seems like my mind keeps trying to convince me to think of reasons why it could be ALS. I read somewhere the twitches in ALS are not necessarily felt by the patient but get pointed out by others. Well, whereas I feel my twitches all over (not sure if there are any that I'm not feeling), but the one under my lip that was a constant pulse like movement for a couple of weeks, I never felt, but was pointed out by my husband!!! That really has freaked me out....I keep thinking well I'm having trouble speaking some words because of it, my lip probably can't form the words well, etc. etc. That pulse like twitch has since disappeared and I do feel twitches around my lips and even on my lip now so there goes the ALS twitches not felt by the patient. For all the wonderful people who have written their kind responses, please don't feel they have gone unheeded, I go back and read them to remind myself....Thank you again!

[Street40]

I am with you on the als fears. 4 months of a constant twitch in my left arm with a weeks break in the middle. Without weakness we are fine!! I am seeing a neuro tomorrow and will update with what he says about this twitching nonsense as i call it.

[Street40]

Appointment went well, twitching without weakness isnt nasty. Seems like we are fine, please stop worrying.

[hope_girl]

Dental-

In my experience assurance seeking feeds the health anxiety and ends up making it worse. The thing about your husband noticing your twitch is insignificant. You are obsessing over this, then seeking assurance by posting about it. HA is almost the same thing as OCD. The obsessive thoughts are relieved by the compulsion of assurance seeking, information gathering, checking yourself and/or hyper vigilance over your body and the current symptom. However they are only temporarily relieved and then you need reassurance again. It’s a vicious cycle. Assurance seeking can also be seeing doctors.

You actually have the power to chose how you will respond to the obsessive thoughts: you can give into the terror and do the reassurance thing or you can use techniques to cope in a healthy way. I listed on technique above that helps me. I have many more tricks up my sleeves thanks to my therapist. HIGHLY suggest CBT therapy. Highly effective for this type of problem.

It is up to you. Do you want to continue to live in this terror or work on the real issue here; your HA? As I mentioned this is the perfect storm for you to work on the anxiety. You can chose to make friends with it and let this fear be a way to guide you to healthier self, or you can chose to repeat the same behavior. In the twelve step programs there’s a saying, “the definition of insanity is repeating the same behavior while expecting different results” - this couldn’t be a truer statement for the cycle of HA.

I hope you take advantage of this time and use it for your benefit. I personally know someone with OCD who has worked very hard in therapy. She told me she is actually thankful she has OCD because of what it has taught her. That may sound crazy, but really good things can come out of really hard things like having HA! I’m not trying to wrap this up in a pretty box with a bow. I’m also not trying to shame you. I’m right there, in the same fear with ALS over the past 4 months. I’m finding myself acting insane at times. But I’m also giving it my best attempt of making friends with the fear. And I’m learning a lot about getting my life back, and living in the moment. I’m learning valuable lessons that I might have never learned if I didn’t have HA. I’m not thankful for HA yet, but I’m getting there.

Hang in there

[Dentalmaniac]

Street40 so glad to hear that your appointment with the neuro was reassuring. I wish the same to everyone here. Hope girl, your post makes so much sense. I had a major HA episode that lasted four months a couple of years ago and I ended up reading about CBT. Definitely something I need to do. For the last two years I have not made a trip to the doctor except for this last visit a week ago....which didn't necessarily go too well. Thank you for your kind words. I am using the techniques you mentioned in your earlier post. Thanks from the bottom of my heart!

[Kingdawson]

I've suffered from twitching for 6 months now. They are usually quick little pops that last a few seconds and disappear at random body parts...but I did get an eyelid twitch that lasted near enough 3 months that absolutely sucked(thank God that seems to have gone).

Right now I have a twitch on the left side of my chest (kinda underneath armpit on left side in line with left nipple). Started the day after a heavy drinking session last week....went away the next few days for a couple of days....came back a couple of days of drinking alcahol and not sleeping well at all.

I must admit "new" symptoms do scare me usually but this one is just kinda annoying (It's happens when I'm in a resting position and kinda stops when I get up or when I move).

Actually during this 6 month of twitching I've actually been the strongest I've ever been and gained a nice amount of muscle mass so the ALS fear I had at the beginning has kind of gone BUT I'm very impatient and get scared that these new symptoms will last forever. Health anxiety sucks man.

[Dentalmaniac]

Kingdawson, I seem to have developed a new hotspot myself today on my right arm and it’s twitching non stop, freaking me out as I type. I know I was paying a lot more attention to this arm since yesterday as I felt this arm was getting tired easier :( Ironically when my HA on ALS started three months ago I felt my left arm was weaker. Since then I started using my left arm for everything I did. Now I’m obsessing over my right and it’s twitching like crazy!

[Kingdawson]

Kingdawson, I seem to have developed a new hotspot myself today on my right arm and it’s twitching non stop, freaking me out as I type. I know I was paying a lot more attention to this arm since yesterday as I felt this arm was getting tired easier :( Ironically when my HA on ALS started three months ago I felt my left arm was weaker. Since then I started using my left arm for everything I did. Now I’m obsessing over my right and it’s twitching like crazy!
It's amazing you say that because the twitching on my left side of my chest started a few days after I panicked after I saw my left pec sort of move which I thought was a twitch. Observed for a few days continuously and it turns out it was ever so slightly moving to my pulse which my stomach also does. A few days later it actually does start to twitch lol.

I swear with health anxiety our thought and fears can actually manifest into physical symptoms. It's actually quite amazing.

[Dentalmaniac]

So true Kingdawson, it’s as if I can have a new symptom every day as soon as I hear about it. Today it was a trembling feeling inside my body after I heard about a relative’s Parkinson’s. HA sucks:(

[Dentalmaniac]

OMG today's a completely new level of panic. My legs seem to be getting so weak. I can still walk and do everything but feels like there's a strange buzzing especially in my right leg and a very weak feeling, almost as if the leg will give out. I so want to believe that it's all in my head and still telling myself that I'm not making a trip to the doctors!!!

[Dentalmaniac]

Another update....since yesterday I have been suddenly choking on my saliva. Almost seems like I will choke randomly as I’m trying to gulp. Regardless to say I am freaking out!! Can this be the result of stress and anxiety?

[Kingdawson]

Another update....since yesterday I have been suddenly choking on my saliva. Almost seems like I will choke randomly as I’m trying to gulp. Regardless to say I am freaking out!! Can this be the result of stress and anxiety?

Yes.

[Fishmanpa]

since yesterday I have been suddenly choking on my saliva....Can this be the result of stress and anxiety?

Absolutely! (http://www.nomorepanic.co.uk/articles/symptoms#Throat_tighteningChokingSwallowing_proble ms)

Positive thoughts

[Dentalmaniac]

Update: Mostly focused on the fact that there are certain words that are harder to enunciate, e.g., saying the "ch" or "oo" sounds. Feel like I have to make a harder effort to say these. Gums seem tighter almost like you've had a novacaine shot at the dentist. Also my toes hurt really bad after I've stood or walked for a half hour or so.....very distressed yet holding on to the thought that if this is something sinister like ALS, a doctor really can't do much. Need to desperately come out of my downward spiraling thoughts and depression over this :(

[Andrash]

Update: Mostly focused on the fact that there are certain words that are harder to enunciate, e.g., saying the "ch" or "oo" sounds. Feel like I have to make a harder effort to say these. Gums seem tighter almost like you've had a novacaine shot at the dentist. Also my toes hurt really bad after I've stood or walked for a half hour or so.....very distressed yet holding on to the thought that if this is something sinister like ALS, a doctor really can't do much. Need to desperately come out of my downward spiraling thoughts and depression over this :(

Do other people notice that you speak slower/slur words/can't pronounce certain words/sounds properly?

[hope_girl]

I think if you focus on your talking and obsess about it and have anxiety that’s saying “am I slurring?” Then you will start to believe you are. This ALS rabbit hole is hard to get out of. I struggle with it right now too but I have to tell myself that what is REALLY going on is OCD-like health anxiety and that is the VERY REAL thing here. Therapy is the only thing helping me. I’ve read online about health anxiety sufferers and ALS fears seem to be their “lowest point”. I hope this thread becomes more about how to deal with the anxiety and stop feeling this fear and obsessive thinking. I know that is what will actually help us all

[Dentalmaniac]

Hi Andrash, i’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it. Hopegirl yes I am definitely focusing on my speech and the more I focus the more I feel it’s becoming difficult to talk. It’s been about six weeks now when I had first felt I was having difficulty saying certain words. That was followed by a weird sensation in my gums as if they are being pulled. I want to say that for a few weeks the gym sensation had gone away and in fact I was thinking to myself wow that weird sensation has gone and happy about it and boom it came back. Maybe I started feeling it because I was thinking about it. At the same time my focus on speech has become obsessive! I hope I can come back and tell others how I obsessed needlessly and created these symptoms through the power of my thoughts and that I’m still going strong. Thank you all for bearing with my long ramble and for being patient with me and continuing to respond!

[Fishmanpa]

Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Positive thoughts

[Dentalmaniac]

Fishmanpa, the first symptom being spurred speech is what has me stressed. Not able to say certain words easily has me in a fix right now!

[Fishmanpa]

Fishmanpa, the first symptom being spurred speech is what has me stressed. Not able to say certain words easily has me in a fix right now!

I’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it

The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!

Positive thoughts

[Andrash]

Hi Andrash, i’ve Been telling my family about difficulty in pronouncing certain words but they don’t seem to notice it.

If you had ALS, you wouldn't notice the slur but they would. They would have asked you if you had been drinking. You don't have ALS. Other people not noticing means your speech is the same as before.

[jemini70]

Hi Dentalmaniac - have you check out the posted sticky on why you don't have ALS? Might be helpful! I'm often twitching, and yes, have also managed to convince myself that my speech was slurring (it's not - you're just over thinking it). As I've seen around the forum, ALS is about failing, not feeling. This is from an ALS Support page:

"ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work."

So the fact that you maybe can't do as many exercises on your left side is not indicative of ALS.

This is also from the page:

"If you have muscle twitching and the internet says that is a symptom of ALS, pay attention. Twitching (fasciculations) is sometimes a symptom of ongoing ALS. It is seldom, if ever, a first symptom of ALS (especially if it is all over your body). Twitching is very common and is frequently caused by too much caffeine, Rx meds, fatigue, over-exertion, anxiety, stress, and many other common causes If you have twitching without clinical weakness, atrophy or hyperreflexia, your twitching is probably not from ALS, which is a very, very rare disease.. "

Your twitching is not ALS - it could be anxiety, stress, vitamin deficiency, etc. I twitch all the time and I don't have ALS.

The ear and jaw have lots of tiny muscles around them that tighten and constrict when anxious and I highly suspect that is the "tight" feeling you feel. Happens to me quite frequently. :)


After reading this, it makes a lot of sense. havent heard ALS described this way at least as it relates to worry about muscle twitching and onset of ALS.
wifi example was really good. GAD, high anxiety over health is by itself a debilitating disease worst than many of the ones we obsess over

[Dentalmaniac]

Hi all, wanted to give an update to anyone who comes across this thread. It has now been six months since I started twitching....I still do, but I can still do all physical activities, so I guess I'm ok. It's also been 3 months now since I started feeling that I have difficulty saying certain words...I can still speak fine (although I feel I have difficulty pronouncing certain sounds after certain other ones), I can still whistle, so I guess I'm still fine. I do become anxious whenever I feel I have to speak slower because of this, but I pull myself out thinking if it was something it would have progressed by now. I will come back again in a few months and report again. Keeping my fingers crossed and hoping for the best for everyone!