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Cmartz2
23-12-20, 02:24
Hi everyone! I’m really glad I found this website as I have been dealing with health anxiety all year and have had panic attacks now for 8 years. I’m currently 27 years old and on Zoloft (thought that might be helpful to include). A little over two months ago I woke up with a weird almost clumsy like feeling in my right hand. I had a hard time gripping a mouse at work, gripping a pen, anything that was small it felt weird to try and grip or hold. I reached out to my doctor to schedule an appointment. He examined my strength and coordination. I was normal in everything. He hit my knees and they were very reactive but it was bilateral so we didn’t worry about that. He said I need to quit searching google (I agree) and to start counseling. I have been in counseling for almost a month now. I thought I would start to feel better but I still have the clumsiness in my right hand and it feels weak. I wear a dress shirt everyday to work and don’t really have troubles buttoning it unless I’m really focused on that. I wake up every morning and my hand feels very heavy/weak/ and sort of numb.throughout the day I feel like I can’t fully stretch my hand and my hands and arms shake when I carry heavy things. Twitching has gotten really bad in my arms and even my left hand is starting to feel clumsy. Could this be limb onset als? I asked my friend if I should get an emg to see if I have als and he said absolutely not (he is a doctor at a hospital in Chicago) has anyone else had this? Thanks!

Fishmanpa
23-12-20, 02:50
I'll tell you what I told another new member in the thread before yours. READ THIS (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!) as many times as you need to.

Positive thoughts

Cmartz2
23-12-20, 02:53
I agree I do need to keep reading that but the stiffness (spasticity) is what worries me and the twitches that occur only in my arms and the weak hand feeling and unable to fully grip small objects

Cmartz2
23-12-20, 16:39
Has anyone ever had these feelings in their hands? Worried I should try and get an emg but also don’t want to spend the money if it’s unnecessary

Worried_91
23-12-20, 22:37
Hi

I'm currently on the same worry as you and get the same! I've booked a drs appointment but I'm so convinced I have ALS and it's driving me insane, I just want to enjoy Christmas!

I had an ache/heavy feeling in my right hand with lots of twitching on the right side of my body but now getting odd sensations in my left arm, almost like I've hit the funny bone in my elbow, even though I've not. Ugh, isn't anxiety fun?

Fishmanpa
23-12-20, 22:44
Again.. ALS is about FAILURE, not FEELING. It's not that something "feels" funny. Its about something doesn't work no matter how hard you try!

If you don't enjoy your Christmas over this, it's entirely you own doing and fault!

Positive thoughts

Cmartz2
23-12-20, 23:02
It’s the worst! But like Fishmanpa said it’s about failure! Anxiety works in strange ways. That’s why we are all here I guess!

Worried_91
23-12-20, 23:14
Totally.

Sometimes I feel l like I can reason with myself in knowing its all in my head and I'll have a good couple of days. Then I'll get a twitch or pain, or slight weakness and BOOM! the fear comes back.

Cmartz2
30-12-20, 18:46
Still having a weak feeling and tightness in my hand and keep going to als. I’ve also noticed my grip strength in my right hand is not as good as it used to be. Starting to worry but don’t want to go to the doctor yet

Cmartz2
12-01-21, 23:47
Thought I was going to get better in the new year. I’ve been seeing a counselor and working on vitamin intake and cutting out alcohol to not bring about panic attacks. I can’t get the als thought out of my head still. My right hand still feels weak (I know feeling means nothing) but it feels like I can’t fully grip something like when I hold my wife’s hand I cannot fully grip her hand because my hand is too weak. It still feels stiff and my wrist is weak. Should I try and get a neurologist involved? I’ve dealt with HA in 2020 and spent a lot of money and really don’t want to schedule more appointments but don’t know what to do anymore. Does any have suggestions? My doctor knows my concerns but hasn’t talked to me and had a neurologist call me directly (I’m guessing because he knows that I’m not going to let my mind go free about als without seeing one) but I also don’t want to pay for it if I don’t need it. My right arm seems to be weaker and that’s my dominant arm. The twitching is in my hands, arms, tongue and eyes and sometimes in legs. I don’t really know where to go from here. Hopefully someone has insight!

Fishmanpa
13-01-21, 01:10
Hopefully someone has insight!

Please THIS (https://www.nomorepanic.co.uk/showthread.php?232384-ALS-and-why-you-DON-T-have-it!) as often as you need to!

FMP

Worried_91
13-01-21, 09:15
Hi

I'm still in the same boat as you. Having a lot of twitching on the right side of my body. My right hand/arm feels weaker than my left. I also thought I was getting better at points but alas, I'm still convinced I have ALS.

There is reassurance that this seems to be a condition that many health anxiety sufferers seem to worry about and hopefully it is our minds playing tricks. But I'm totally with you on this.

Cmartz2
14-01-21, 02:18
Yes it’s the worst! Do you have tongue twitches when your tongue is at rest? Or lip twitches? That’s what I always get worked up about. And my right hand being stiff and feels like I’m losing some movement in jt

Worried_91
14-01-21, 09:15
If I look at my tongue in the mirror I can see it twitching but I think this is normal if you're holding your tongue out?

I have had the lip twitching and also a twitch below my right eye and eyebrow which has concerned me! But yeah I've had stiffness of right hand that feels less dextrous, lots of twitching and what I'd describe as very minor cramps.

Cmartz2
14-01-21, 15:03
Yeah that’s definitely normal! I get them when my tongue is at rest. Which doesn’t seem normal. The hand thing is scary! But I’ve decided I can no longer ruin my hand by squeezing it and messing with it! I’ll wait until I can’t open it all😕

Worried_91
16-01-21, 09:30
I think that's the thing with this fear. It's all about time. I guess if things don't get any worse i.e the hand weakness, then it's benign? The most worrying thing I'm having at the moment is a right shoulder twitch. It's almost been constant for the past week. Have you had localised twitching for a length of time?

Cmartz2
16-01-21, 23:48
Yes! I often get it in my quad. I never ever used to think anything about it till I thought I had als! My main thing now seems to be hypersalivating and tongue twitches. I don’t really know what to think about it and I’m slurring my words from time to time

Fishmanpa
16-01-21, 23:52
Still not ALS :lac:

FMP

Cmartz2
17-01-21, 01:15
Trying to get through it @fishmanpa! The excess saliva and twitching just has me worried and the slurred speech occuring

Worried_91
17-01-21, 13:59
I've also got a weakness in my calf and right foot and when I go running they tire quicker than the left. Can these all really just be symptoms of anxiety?

shotta287
17-01-21, 15:11
hello I am in the same boat! My pinky on left hand has been twitching on and off for almost 2 months now! Fearing the worst!

Cmartz2
17-01-21, 15:55
@worried well, if you’re running I would chalk that up as a win! If you had als I don’t think you would be running on your own or walking much either.

@shotta287 are you weak at all in that hand? I started taking b12, magnesium, and d3 (mainly) because of covid) but have noticed that the twitching has gotten a little better everywhere but my tongue. Now, with that being said I don’t tell you that saying you should take it and I would talk to your doc/ do your research beforehand. I’ve had a twitch in my leg since I was a runner and soccer player and that was over 10 years ago.

Worried_91
17-01-21, 16:18
I'm so utterly convinced I have got ALS. From looking at stories of those unfortunately who have been diagnosed I seem to have very similar symptoms.

Cmartz2
17-01-21, 16:45
If we have similar symptoms to those diagnosed to als then the rate of als would be much higher than >1%. A twitch would mean we have als. Feeling weak is being weak. If you can run like you said you do not have als. You would be limping the entire time you ran as one or BOTH of your legs do not respond to movement. Take a deep breath! We are all on here assuming we are diagnosed with a terminal illness yet none of us seem to show patterns of it. I have to tell myself that everyday. You need to tell yourself that. We all do.

Worried_91
17-01-21, 17:05
Thank you @Cmartz27 for your reassurance, it helps for sure. I'm comparing myself to someone who also ran frequently and said they had tight leg muscles which later turned out was ALS. They however were tripping whilst running which has yet not happened to me. I hate that somedays I have only very minor intrusive thoughts about it but today they're major. I wish the worry could just switch off.

Cmartz2
17-01-21, 17:17
There you go! It hasn’t happened and it won’t! Tight leg muscles is such a broad symptom. Sometimes the story isn’t fully there or it’s been told by other people who left something out. I hear you on the thoughts. It’s the worst. But (from what I’ve read) about als... it doesn’t come and go. It’s there. So keep running and running till you can’t anymore! We do only get one life. I’m here for you and with you! We can get through this together!

Worried_91
17-01-21, 17:23
Thank you! That really helps, a lot! I think again, will just be a matter of time and seeing how things go! In this together for sure! There's got to be light at the end of the tunnel, right?!

Cmartz2
17-01-21, 17:49
You will be okay! Just keep the running going! There is light at the end of the tunnel for sure!

Murphy93
17-01-21, 19:18
Hi guys,

Just wanted to say I know how you feel . I’ve been in the als rabbit whole for over 2 years now . Twitching on and off all over my body . Theres been periods of times where I’m convinced I’m getting weaker but things go back to normal . It’s a hard place to get out of but you will get there eventually . Try not to worry and take lots of vitamins I think that’s why I’m twitching so much due to deficiency

Worried_91
17-01-21, 19:52
Hi @Murphy93 thanks for the post. It seems to be a fairly common worry of those with health anxiety which is also reassuring. I can't see my way out of the rabbit hole just yet but I'm hoping it's not too far away!

Cmartz2
17-01-21, 21:33
Thanks for the words @murphy93! Once we are all through this and on the right track we are going to look back and be so upset with all the time we wasted instead of living!! The only thing that is 100% guaranteed in life is death and until then we have to LIVE!

Murphy93
17-01-21, 22:08
Thanks for the words @murphy93! Once we are all through this and on the right track we are going to look back and be so upset with all the time we wasted instead of living!! The only thing that is 100% guaranteed in life is death and until then we have to LIVE!

So true C martz! Sometimes I look back 2 years ago when it all started and I can’t believe I’m still worrying I get so mad at myself . It’s such a waste of life and I think in recent times it’s show how all too precious it is

Cmartz2
17-01-21, 22:45
Being held back by it is the worst! I’m ready to move on and sometimes I feel like I’m going to then I’ll get a twitch and globus and I’ll
Restart

Worried_91
18-01-21, 19:22
I'm having such a bad day today 😕 It feels really tight and aches, which I'm thinking is spasticity, below my right calf and my right arm and leg/foot has been twitching all day. I'm certain this is ALS.

Cmartz2
18-01-21, 19:45
IÂ’m there with you. Having awful anxiety but IÂ’m 100% at fault there for drinking too much coffee. I know better, can you still run? Are you
Stretching properly? Do you drain your legs after you run? How long had all of this been going on?

Worried_91
18-01-21, 20:22
Ah I know coffee can really fuel the anxiety symptoms. I've not been for a run today but was thinking of going tomorrow. I went for a run yesterday and thought my leg would be feeling better today but it's worse. It's worrying me that it's all happening on the right side of my body I.e. the twitches, weakness, aches etc. I'm so worried.

Cmartz2
18-01-21, 20:39
Are you actually weak? Or is it perceived weakness. I know the feeling of being weak but until you fail to do something you are not weak. Muscle tension is very frequent in us stressors and anxiety. Do you take any vitamins or anything? Hydrate properly? Stretch before AND after running? Have you ever filmed your running form? I used to be a runner so I know how this all goes. Also, have you ever researched how hard running can be on your joints? There is a lot of conflicting info from
Both sides but i don’t run anymore because it was too much force on my knees and I felt sore everyday.
Also, just noticed my profile says I’m a female😭😭 messed that up! I’m a 27 year old male

Worried_91
18-01-21, 20:59
I don't think it's actually weakness but I'm not so sure how to test it? I take a range of supplements and drink lots of water so can't it'd be anything related to that. I think my running form is fairly good? I've been running for a number of years now. But the ache/pain in my right leg is what is concerning me as I've not had it from running before.

Fishmanpa
18-01-21, 21:12
You do realize none of you have ALS right? You just 'think' you do with absolutely no valid reason.

FMP

Cmartz2
18-01-21, 21:16
Don’t take offense to this as I’m being sarcastic but it’s very good to hear it’s “aches & pains” because als is not painful. I’m not an expert but I’ve read enough to know that. Read the sticky at the top of the page. Aches and pains point away. Can I ask you something? If you were diagnosed with a terminal illness today... what would you do? Continue to feel sorry for yourself or live your life to the fullest with the time you had left? Your diagnosing yourself with a terminal illness you do not have while people out here are actually being diagnosed and living as much as they can before they can no longer. I’m not saying this just to you @worried_91. I tell myself this all the time and it helps for a little or as long as possible. Just keep practicing on yourself and quit worrying about what isn’t there. The more you worry about a dent the more it will appear

Cmartz2
18-01-21, 21:26
@fishmanpa I’m getting there! It took me a few months but being on here has helped me realize more that I’m just in my head! My hand doesn’t bother me at all anymore even though it’s the same. I just know I overuse it and need to rest it. Sitting on my phone all day is a major player there. I have globus because of anxiety/stress

Worried_91
18-01-21, 21:31
Yeah I've seen that pain and aches aren't generally associated with it but I've seen stories where this can be the first signs in some people. I do feel guilty and awful for the people who have been diagnosed, but then I think 'this is the one'. Sorry I'm blabbering, today really is a bad day I can literally feel the anxiety surging through me. Very valid point you make though. When I'm thinking rational I think if this is ALS, I need to make the most of what I've got left. But today isn't that day. Thank you though, you're a very supportive influence, I appreciate it. @Fishman Health anxiety truly does make it feel like you can have anything and with the symptoms I have I.e. right side twitching all over, right leg, arm and hand weakness and spasticity I'm really struggling to believe it isn't ALS.

Cmartz2
18-01-21, 21:45
Knock it off!!! You donÂ’t have weakness. You just said you went for a run yesterday. I read a story once that dilated pupils was a sign of a brain tumor so I thought I had one. And for months convinced myself it was there. I got an mri and there was nothing there. Last July I read that constipation meant I had colon cancer. Convinced myself I had it and lost 20 pounds. Colonoscopy and endoscopy in October and they found nothing. Had a pain in my back late September/early august read a story about that being lung cancer. Had an X-ray and nothing was found. Do you see where IÂ’m going with this? There will be millions of stories of different things people had but a lot of those stories leave out other symptoms.

Worried_91
18-01-21, 22:12
You're right. I guess we can relate a symptom to any serious condition our brain wants us to believe. I'm looking forward to getting through this.

Cmartz2
18-01-21, 22:22
Everything is a symptom of something. Or something like that. You don’t have als! Be happy;)

Murphy93
18-01-21, 22:45
I can totally vouch for the Brain producing symptoms that you fear . I had a horrible lymphoma fear years back and had every symptom under the sun consistently no one could tell me any different . 9 years later I’m still here and funnily enough no symptoms .

Hopefully I can find the same result with this god awful fear . 2 years is long enough to worry about and I must admit I have had better days than worse days now which wasn’t the case a few months back I just need to try and get on with my life And remind myself I don’t have als . 2 years on I can still lift weights I can still work out I’m not deteriorating - wish my brain would accept this :)

@worried91 you will be fine, your young and healthy and fit . Try giving yourself a dedicated time to worry say 15 mins and then move on, before you know it weeks will have passed where you haven’t worried at all and I bet you notice you symptoms diminishing :)

I hope you are both okay as I really know what it feels like to be overwhelmed with this fear it eats you up inside it’s a terrible worry

Cmartz2
18-01-21, 22:57
The brain does crazy things @murphy93!! I like to imagine what I could have done with all the money I spent having tests ran🤣🤣🤣 2 years!? You’re doing great!! Keep lifting!!! We are all in this crazy battle together

Murphy93
18-01-21, 23:01
The brain does crazy things @murphy93!! I like to imagine what I could have done with all the money I spent having tests ran🤣🤣🤣 2 years!? You’re doing great!! Keep lifting!!! We are all in this crazy battle together

Tell me about it cmartz! My brain is unbelievable lol - I wrote down all the illness’ I was convinced I’ve had and I was shocked I’m surprised I had time to eat and keep down a job!

Thank you so much I am trying so hard to keep my head above water with it all . Positive thinking and all that

Worried_91
18-01-21, 23:04
Thanks @Murphy93 it really is eating me up inside. Right now I feel like a shell of myself. I feel like I can't look forward to anything because my time is limited, it's insane but feels so real!

So have you been dealing with the ALS fear for 2 years? Wow, what have your symptoms been? I'd say if it was ALS you surely would have deteriorated a lot by now. I've had it for around 2 months now but it's overwhelming.

I hope all of us will soon be seeing the other end of our fear!

Murphy93
18-01-21, 23:53
Thanks @Murphy93 it really is eating me up inside. Right now I feel like a shell of myself. I feel like I can't look forward to anything because my time is limited, it's insane but feels so real!

So have you been dealing with the ALS fear for 2 years? Wow, what have your symptoms been? I'd say if it was ALS you surely would have deteriorated a lot by now. I've had it for around 2 months now but it's overwhelming.

I hope all of us will soon be seeing the other end of our fear!

I know 2 years it’s crazy and your right I would be seriously ill by now - that’s logic speaking but my brain wants to behave otherwise

I was initially on the MS path and went down als , it’s the usual anxiety symptoms twitching , I went to the doc and found out I was pretty low in vit D which is a symptom so I don’t ones why I can’t believe it

Also had an obsession with my speech and globus a year ago , it’s ruined every event in my life 2 hen parties holidays weddings all consumed by this fear

I also put things on hold and really really regret it I really hope you can recover faster than me I wouldn’t wish it on anyone

Cmartz2
19-01-21, 00:54
We’ve missed so many things but what makes it worse is looking back on it. Look ahead to the future and how amazing it is going to be! Low vitamin D is a symptom of als?

Murphy93
19-01-21, 01:19
Thanks @Murphy93 it really is eating me up inside. Right now I feel like a shell of myself. I feel like I can't look forward to anything because my time is limited, it's insane but feels so real!

So have you been dealing with the ALS fear for 2 years? Wow, what have your symptoms been? I'd say if it was ALS you surely would have deteriorated a lot by now. I've had it for around 2 months now but it's overwhelming.

I hope all of us will soon be seeing the other end of our fear!


We’ve missed so many things but what makes it worse is looking back on it. Look ahead to the future and how amazing it is going to be! Low vitamin D is a symptom of als?

No sorry!! Twitching is a symptom of low vitamin d :)

Cmartz2
19-01-21, 02:06
Hahah I was gonna say! S***!!!!

Cmartz2
19-01-21, 16:50
Decided to get back in the gym today! Lifted chest and shoulders and couldn’t lift my arms above my head after. Of course I jumped to weakness but obviously know that muscles tear easily when you’ve been inactive for such a long time. One thing I really wanna know more about is why anxiety causes excess salivation and throat issues

Cmartz2
19-01-21, 20:32
Fell down the rabbit hole today after I was helping someone and noticed my voice was tiring and slurring. Now it’s happening all day. My mouth is full of saliva. Twitching happening. I thought I was done with the als thing after I just realized my hand is not weak just stiff from overuse but now my mouth is worrying me

Worried_91
19-01-21, 21:30
Hey @Cmartz2 Good job with getting back in the gym, I can't as we're in lockdown in the UK and all gyms are shut. I did manage a 6k run though so feeling slightly better today. I've still had the right side twitching but trying not to focus.

I had the hypersalivating thing a couple of years ago but wasn't thinking it'd be ALS related at the time. It really isn't anything to be concerned about, but it took a while for it to go as its worse when you focus on it. I put it down to acid reflux or just good ol' anxiety.

Cmartz2
19-01-21, 22:04
Yeah I’ve read that it can be anxiety! I guess the main thing is the twitching on my tongue. Globus is definitely due to anxiety! Because it comes and goes but the twitching happens a lot. That’s a long run! Good for you! I know if I tried that I would definitely pass out. I tend to forget this is a UK based website and I’m in the US where covid sadly isn’t taken as serious.
I got it in august but was lucky to get through it with minor symptoms

Worried_91
19-01-21, 22:20
Definitely anxiety related! With the tongue if I stick mine out, it twitches all over but I think that's just the strain of poking it out. Yeah, I mean I can't say out government have managed it well over here, but here's hoping everything gets back to normal soon!

Cmartz2
19-01-21, 22:41
Yep time to relax!! Yeah sticking it out it’ll twitch every time!

Worried_91
19-01-21, 22:48
Definitely! You got this!

Cmartz2
19-01-21, 23:19
Having a twitchy tongue and troubles swallowing sucks and it’s a crappy feeling but I know I gotta get out of my head! Almost made it completely out then had the twitching all day today

Worried_91
19-01-21, 23:33
I can assure you they are anxiety symptoms, I've had them numerous times! The twitching is what's getting me though

Cmartz2
20-01-21, 01:13
Tongue twitches?

And are you saying the twitching is the only thing getting you through it or they are getting to you? And in your thigh?

Worried_91
20-01-21, 09:02
The tongue twitches I think are normal, have you got anyone to ask to compare?

The twitches have been getting to me, I get them all over, mainly the right side. Yep in my thigh, face, shoulder, arms, feet you name it!

Cmartz2
20-01-21, 13:47
No one to compare to. Just need to understand that I’m having twitching everywhere and not just my tongue. The good news is widespread twitching is just stress/anxiety I guess! So we must both be in the clear! My allergies are quite bad so I’m guessing that’s why my throat is so full too

Cmartz2
20-01-21, 20:25
Today my therapist challenged me to cancel my neurologist appointment in March. He asked my symptoms and I started with tongue twitching and he said right away “anxiety”. Of course it’s time to believe it. I was doing so well and then hit the internet again. Oh how google can trick us. Now I’m constantly clearing my throat, full throat feeling and twitching! Lovely!

Worried_91
20-01-21, 22:10
I get a lot of throat tightness, particularly when I feel anxious, even sometimes feeling like it's hard to talk but it doesn't really worry me.

I've again been having a lot of twitching and what I feel is weakness in my leg and arm.

Cmartz2
20-01-21, 22:37
Yeah the throat feeling sucks. A lot of congestion and nasal voice. Feel like I’m almost choking on my tongue lol

Worried_91
21-01-21, 08:33
Yeah, it does suck but the long you're not subconsciously thinking about it the sooner it goes.

Cmartz2
21-01-21, 16:47
Yep I hear you! Allergies are bad where I live so I’m probably way over thinking this

Worried_91
21-01-21, 19:36
Allergies will definitely play a part. I had a doctors appointment today. They said possibly a pinched nerve but unsure as to why it's all happening on one side which has me a bit concerned. I have another appointment next week and may get referred to a neurologist. Trying to stay calm and not catastrophise!

Cmartz2
21-01-21, 20:47
Remember you ran over 3 miles the other day! That’s a pretty long run if you had als 🤪🤪🤪 my doctor told me to cancel my neurology appointment today so I’m really gonna try and get these thoughts out of my head!

Worried_91
21-01-21, 21:08
I know this is the thing?! The twitching is really frustrating though!

That's good I guess your doctor is encouraging that and reassuring?

Cmartz2
21-01-21, 21:30
Yeah the twitching sucks! I guess just have to let it happen though!!

Yes he said he didn’t see a reason for it and only said I could go if it helped ease my mind

Worried_91
23-01-21, 08:59
How are you doing @Cmartz2? My twitching seems to have decreased significantly which I'm pleased about. I managed a 10k run too yesterday and all seemed OK, hoping it continues from there!

Cmartz2
23-01-21, 13:38
Hey @Worried_91! I’m doing better. My allergies are kicking my butt but I’m attributing that to a dog that my wife and I watched this week as I’m allergic to them. I hear you on the twitching! I only had 2 or 3 tongue twitches yesterday which made me feel better. Dang! 10K!? That’s impressive! Keep it up!

KR21
25-01-21, 14:55
I am so glad I found this thread because I am having the same symptoms as you all.

Weakness/heaviness and aches and pains in my left arm.

Twitches all over my body. Everywhere all day. Which I feel like I just started noticing recently after reading about twitches but can’t remember exactly. Ugh anxiety.

I have hyper reflexes as stated by one of my docs so that freaked me out too but they are bilateral as well and I think I’ve always had hyper reflexes but I’m not positive.

Stiffness in some of my muscles. I can still lift things with my left arm and do things it just shakes and gets tired easily it seems. It’s the arm I’ve always carried my almost 3 year old in. Maybe that’s it. I hate this hole I’m in. I can’t seem to get out.

Cmartz2
25-01-21, 18:30
I have hyper reflexes in my knees as well. Always have. Never been worrisome and doctor agrees. The shaking is scary but it’s probably not due to als! (I say probably because I’m not a doctor) probably due to holding your baby! I get tongue twitches and troubles swallowing which has me worried

KR21
25-01-21, 18:43
I used to think I had issues swallowing too because I constantly have post nasal drip and always clear my throat but my doc says anxiety related.

Yeah it doesn’t shake like a lot it just gets tired. But it’s been achey and pains and stuff since last year (right about around when my son got a little heavy lol) I would ALWAYS carry him on my left arm so I could use my right arm. I’m hoping it’s just re injury over and over carrying him?? I pray so. I’m so nervous about this I’m losing sleep and not eating. I hate it. But that makes me feel better about reflexes!!

KR21
25-01-21, 18:45
Do you get random little twitches everywhere too??

Worried_91
25-01-21, 19:33
Honestly, your symptoms sound almost identical to mine! I think you've answered the ache in your left arm, from holding your son all the time.

Twitching all over I can assure I have had! It's so frustrating because once you feel one twitch, it's as though they don't stop but they will, trust me. The ALS hole is a very easy one to get stuck in because of the severity of the disease but it is very rare.

KR21
25-01-21, 19:49
ItÂ’s so hard!!! I cry all the time because IÂ’m so scared to leave my son. I get so overwhelmed in my thoughts. But yes itÂ’s like I notice one twitch and then they keep happening!!! Lol I hope I found the issue with my arm. Because I just carried him again a second ago and it instantly started aching again. I still canÂ’t think logically with this though. My reflexes being overactive scared me too. I also have stiff neck but I look down at my phone allllll the time and IÂ’m stressed so I probably have tension. Shew!! Anxiety.

Have you had weakness or aches anywhere too?? I get numbness also at times but IÂ’ve read als doesnÂ’t cause numbness.

Worried_91
25-01-21, 21:10
Oh please don't worry, I'm sure you are fine. It sounds very much like symptoms of anxiety and stress.

Yep, I've had weakness/aching in my arms and hands after a little activity which has been odd. But the less I am thinking about it, the less it affects me. Anxiety can cause stiff muscles and certainly in your neck. I remember a few years ago it felt like my head was going to pop if from the tension in my neck!

KR21
25-01-21, 21:44
Yes!! That’s how I feel at times haha.

I just hate that it’s just one arm because that worries me. But I guess since it is the arm I have always carried my son in that would make sense. I just hate it. Ugh!

Fishmanpa
25-01-21, 22:27
You all have rational explanations for your symptoms, you're all posting on an anxiety website and none of you have ALS. While it's somewhat beneficial to reassure yourselves via the forum, it's keeping you in the HA loop. Time to treat the real issue :whistles:

Positive thoughts

Cmartz2
26-01-21, 00:44
You all have rational explanations for your symptoms, you're all posting on an anxiety website and none of you have ALS. While it's somewhat beneficial to reassure yourselves via the forum, it's keeping you in the HA loop. Time to treat the real issue :whistles:

Positive thoughts

Although I agree about having rational explanations I do find the tongue twitching weird and the fact that allergy medicine isn’t making my throat and breathing much better. Very weird

Fishmanpa
26-01-21, 00:47
Still not ALS :lac:

FMP

Cmartz2
26-01-21, 00:52
Still not ALS :lac:

FMP

For some reason your responses always brighten my day 🤣🤣🤣

KR21
26-01-21, 00:59
I agree. But still scary!! My arm “weakness” I am hoping is in my head as far as weakness goes because apparently there’s a difference in clinical weakness and what I feel is “weak”. I’m trying to get out of this hole I’m in! The muscle twitches don’t help!!

Cmartz2
26-01-21, 21:02
Feeling weak is not being weak! I had the same worry about my hand for a while. You aren’t weak you just think you are. I hear you on the twitching. I get them all over my body but the ones on the tongue worry me the most

Cmartz2
27-01-21, 03:04
Really struggling today. Tongue has been twitching more than usual and I mispronounced/slurred some words that was very noticeable.

Worried_91
27-01-21, 09:07
Can you feel your tongue twitching or is it only when you stick it out?? I think it's normal to mispronounce words on occasion, especially if you're feeling anxious at the time! I've done it many times before. You mentioned slurring your words a while back. I'm sure by now it'd be much worse if it were anything sinister.

Cmartz2
27-01-21, 15:07
Yeah I can feel them when my tongue is at rest. Yeah I think the slurring is somewhat in my head

Fishmanpa
27-01-21, 15:30
"If you are not being asked " are you drunk?" it is a good sign!"

FMP

Cmartz2
27-01-21, 16:24
I was diagnosed(?) with alcoholism so I hope people aren’t asking me that!

KR21
27-01-21, 17:18
I too am having a bad day full of anxiety. My left arm issues continue and now my fingers are stiff in that hand. I will say, I’ve been doing SO much with that hand trying to prove to myself I don’t have weakness, including moving my fingers around like crazy. Maybe I just irritated them. But that and my muscle twitches are just getting to me today. Gosh I hate this.

KR21
27-01-21, 23:33
Has anyone been to a neurologist to talk about their symptoms yet?

Cmartz2
27-01-21, 23:47
I have not. I have an appointment in late March but have been challenged by my therapist to cancel it and work on my anxiety. I asked my doctor if he thinks I should cancel and he was fine with it as he has told me before he doesn’t see als. I am going to watch my symptoms and see what I think in a week or two

KR21
28-01-21, 00:11
I think that’s great that they are that confident!! What are all your symptoms?

Fishmanpa
28-01-21, 00:23
I think that’s great that they are that confident!! What are all your symptoms?

Symptom comparing and logging your daily worries and symptoms, especially when none of you have this very rare disease is not constructive. I get that reassuring each other can be cathartic but after a month and 10 pages of reassurance seeking, how has it really benefitted anyone involved?

Positive thoughts

Cmartz2
28-01-21, 01:12
@KR21 I have displayed all my symptoms throughout my postings. I don’t want to write a list of them

@fishmanpa I agree symptom sharing does not help. Only adds more anxiety as to why you do or don’t have the same thing.

KR21
28-01-21, 01:19
So sorry. I’m pretty new to this. I apologize for overstepping.

Fishmanpa
28-01-21, 01:28
So sorry. I’m pretty new to this. I apologize for overstepping.

You're not overstepping. You're displaying classic HA behaviors and feeding your dragon.

Positive thoughts

KR21
28-01-21, 01:34
I agree with that. I’m working on that. I just got into this crazy rabbit hole a couple weeks ago and I’ve hit rock bottom. Lost 10 pounds in two weeks from worrying. Trying to climb out!! I think I’ve even made symptoms happen from this anxiety!! Because I don’t even remember twitches before all this! Shew. I need to step back and work on my mental health. Thank you.

Cmartz2
28-01-21, 02:33
@KR21 don’t worry you did not overstep at all. Just better for both of us not to try and compare symptoms!! I understand the weight loss. I thought I had cancer in September and lost over 20 pounds in 2 months. I had plenty of tests ran to be told I had depression and anxiety. Take care of yourself now before it gets too far!!! You deserve it

KR21
09-02-21, 16:20
Just checking in on you guys. How is everything going with you all?

Cmartz2
09-02-21, 18:15
It’s here and there. Haven’t had anything worse come about so it’s not a bad thing I guess! How about
You?

KR21
09-02-21, 19:28
About the same. Still twitching. All over and every twitch sends me into panic. Still have stiff/achey back of neck. Just trying to not let it get to me too much.

Cmartz2
09-02-21, 19:30
Did you have a neurology appointment/emg?

KR21
09-02-21, 19:39
I had neurology appointment and an arm EMG and it was clean besides cubital tunnel in my elbow so might have to have a minor surgery for that. But my mind immediately went to the fact that they only tested my arm and I have twitching in other areas. I also worried that I hadn’t been twitching long enough before the EMG (only 2 weeks or so) and that I had the EMG too early. So I’m still in the stupid hole. I start therapy next week.

KR21
10-03-21, 14:06
Hey! Have you had your neuro appointment? How are you?

Cmartz2
12-03-21, 02:21
I actually cancelled it a few weeks ago. I’m doing better. How about you?

KR21
12-03-21, 17:21
That’s great!! How’s the twitching?! I’m doing better too. Just trying to relax now and really accept my anxiety for what it is! It really helped to read stuff on here with so many people with brisk reflexes and twitching! It’s reassuring:)

KR21
14-03-21, 20:10
What did your doc say about the tongue twitching? Do you still get them? Mine just started and it’s like little flickers it’s weird.

Cmartz2
16-03-21, 22:00
My doctor is not concerned. I quit going to him as he told me als is not the cause and I need to believe him. Also had my therapist whose grandmother had als tell me that it’s not that. So I’ve done my best to stay away from that hole. Do you get your tongue twitches at rest or when you stick your tongue out?

KR21
16-03-21, 22:50
Only when I’m sticking it out. I don’t feel it either just see a flicker when I stick it out. It’s annoying to watch and scares me. But I’m glad you’re out of the hole. It helps since you also had tongue twitches and body wide ones as well

Fishmanpa
16-03-21, 22:53
Only when I’m sticking it out.

Under normal circumstances, people don't do that and look for anomalies, so what does that tell you? ;)

Positive thoughts

Cmartz2
16-03-21, 23:51
Everyone’s tongue quivers when they stick it out. They look for what’s going on when it’s at rest

KR21
17-03-21, 13:29
It’s just weird because it flickers in the same exact spot every time when I stick it out it’s just odd ugh

Cmartz2
25-03-21, 20:05
Anyone ever feel like their tongue is heavy and mispronouncing words?

Fishmanpa
25-03-21, 20:44
Anyone ever feel like their tongue is heavy and mispronouncing words?

There are pages of this on the site. Do a search. It's perception not fact.

FMP

Cmartz2
28-03-21, 18:44
Just seems odd. Feel like it’s harder to talk and my tongue is not as strong anymore

KR21
29-03-21, 12:55
Yes I do this. It also feels like my tongue is too big for my mouth. It’s weird.

Cmartz2
31-03-21, 18:08
Yes I feel like I’m always biting on my tongue when I have my mouth closed. My tongue just truly seems weak like I can’t move it as wel anymore and I can’t talk as smoothly

KR21
04-04-21, 20:55
Does yours twitch if you tap it really hard while sticking out? Weird I know but when I tap my tongue it’ll twitch

Fishmanpa
04-04-21, 20:59
Does yours twitch if you tap it really hard while sticking out? Weird I know but when I tap my tongue it’ll twitch

Why in heaven's name would you do such a bizarre self checking behavior? :huh:

FMP

KR21
04-04-21, 22:47
Because someone on a Facebook group did it and it made me try and I’m crazy lol

Cmartz2
05-04-21, 21:01
I’ve never tried that and I don’t think I will. My tongue twitches without hitting it

Cmartz2
11-04-21, 05:04
Kind of in a hole.... tongue has begun twitching a lot more recently when my tongue is at rest. My lips have begun to twitch and so has my cheeks. Feel like my tongue/throat is weak but I haven’t choked. The twitching is kinda freaking me out since it’s happening so much on my tongue

Cmartz2
20-04-21, 19:38
Struggling quite a bit lately. Feel like my tongue is twitching more everyday and my throat is getting weaker. I asked a radiologist today if he had ever heard of tongue twitches and he said he has never heard of that in his 40 years and that I should see a neurologist. I told him i was worried about als and he said if it keeps getting worse to get checked right away. Idk what to do or think. I can’t get out of this thought and thinking I have this cruel disease. I know I’ve been carrying on for so long but I feel like I just keep getting worse with my tongue and throat

Fishmanpa
20-04-21, 19:41
Then book an appointment. The "Told Ya So Gang" will be on standby ;)

FMP

Cmartz2
20-04-21, 20:15
You’re right. I probbaly should learn to deal with this and I definitely don’t have any more money for doctors appointments and tests. Just an unnerving to hear a professional say that and also feel these symptoms

Fishmanpa
20-04-21, 20:46
You’re right. I probbaly should learn to deal with this and I definitely don’t have any more money for doctors appointments and tests. Just an unnerving to hear a professional say that and also feel these symptoms

This thread was started nearly 4 months ago. I think you know where I'm going with this. Why not treat the real issue? :shrug:

FMP

Cmartz2
20-04-21, 21:57
I agree @fishmanpa. I’ve been in and out of it for 4
Months now and have let a few things get to me including today. I’ve been in Therapy for 5 months and has helped here and there. My therapists grandma had als and even he has said I do not have it.

KR21
21-04-21, 09:27
Join bfs on Facebook and you’ll see how common tongue issues are. I’m struggling too. Here if you need anything

Cmartz2
25-04-21, 18:33
In a rut today. Feeling like I am having troubles swallowing and having to force it. Hoping this all ends soon

nomorepanic
25-04-21, 18:49
Sadly it won't end unless you take action to end it

Cmartz2
25-04-21, 21:39
I agree. Just struggling to get through it even with the help of a therapist and medication

nomorepanic
25-04-21, 22:29
It is hard work - we all know that but only you can change the future sadly

Cmartz2
28-04-21, 00:12
This is the deepest I’ve been in a long time. I’ve been through the cancer scares and what not and those weren’t hard to get out of. This one is taking a toll. My tongue twitching at rest, troubles swallowing food, feeling like something is in my throat, hoarse voice, occasional throat twitches. Feel like it’s all starting to slowly go downhill.

KR21
03-05-21, 13:53
Have you seen a neuro?

Cmartz2
03-05-21, 18:48
I have not

KR21
05-05-21, 06:06
I think it’s all anxiety but why don’t you make an appointment with neuro just to ease your mind and put it to rest!

Fishmanpa
05-05-21, 12:17
I think it’s all anxiety but why don’t you make an appointment with neuro just to ease your mind and put it to rest!

While there are times I would agree with seeing a professional but in this case it would be paid reassurance that will inevitably be short lived. I've seen it thousands of times here. This thread is now 5 months old. I think an appointment with a mental health professional would be more pro-active and in order.

FMP

Cmartz2
05-05-21, 19:02
I go to therapy. Just stupidity to keep backtracking and thinking I have something. If my tongue didn’t twitch I think I would feel better

Cmartz2
10-05-21, 17:11
I feel like talking is taking more effort and my throat is definitely full or weak. I’ve been on prednisone for 2 weeks now. Feeling pretty sh****

Cmartz2
10-05-21, 21:38
Also feel like I have fluids going up my nose when I drink

KR21
11-05-21, 16:12
While there are times I would agree with seeing a professional but in this case it would be paid reassurance that will inevitably be short lived. I've seen it thousands of times here. This thread is now 5 months old. I think an appointment with a mental health professional would be more pro-active and in order.

FMP

I have been dealing with this for almost 5 months now as well. And clean emg at 3 months (worried it was too early). Wonder if I can let it go now?? 5 months enough??

Cmartz2
16-05-21, 17:52
When can I stop worrying? It’s been what 5 months. Started with my hand now feel like it’s Bulbar. Tongue feels exhausted and weak and my voice gets exhausted quickly

BlueIris
16-05-21, 17:56
You can stop worrying when you get a handle on your health anxiety.

Cmartz2
22-05-21, 17:44
I’ve been working on it but it seems like something new comes every week. Now I have begun feeling twitching in my throat inside and out and definitely noticed my mouth feels tired after eating very little

KR21
25-05-21, 00:56
I’m convinced I have hand atrophy now so I’m not doing well either. Sending you positive vibes. Maybe book a neuro so you can calm down.

jojo2316
25-05-21, 09:21
Just wanting to say hi, and join the als worried club! I have twitching in my shoulders and what I believe to be weakness..... so I feel your pain! X

Cmartz2
16-06-21, 18:18
Was doing a little better for a little bit of time. Visited here just to see updates from people. But as much as I tried to stay away and feel better I couldn’t fully get there. I’m starting to worry more now as my tongue seems to twitch more and my throat always feels full to the point I can’t really talk in the mornings. I also feel like my mouth is tired when I chew and that I don’t fully chew my food because of it and it’s harder to get down

Fishmanpa
16-06-21, 18:21
This thread started 6 months ago. Sorry to see you still struggling due to this unfounded fear :( Hope you feel better soon.

FMP

Cmartz2
28-07-21, 04:38
Came on here 7 months ago thinking I had limb onset als that then turned to bulbar als. This was all right after I convinced myself I had cancer for a few months. I can now say I’m out of those fears. I have twitches, my voice sounds weird but it’s all in my head. I had every symptom I could think of but none of it truly existed. Just wanted to update on here. I’m free of the negative health thoughts and just trying to enjoy the time I have here. Thank you to everyone who talked to me throughout this whole process as well

jojo2316
28-07-21, 18:36
Thank you so much for such a lovely update. It’s good to hear good news :-)

Cmartz2
17-08-21, 15:03
Thought I was going to get better and honestly did feel better for a while. This weekend it hit me and I noticed I was having trouble talking more than a few words. My tongue feels stuck like it’s not moving correctly and my jaw feels tight. I am having tons of saliva to the point it feels like my voice sounds like I have a mouthful of water. Idk what’s going on. I get random bouts of emotions like crying or laughing. Really concerned again but this time it feels like it’s real and not just in my head

glassgirlw
17-08-21, 20:40
Go back and review how you were felling July 27th. How did you get to that place? The place where your fears had been beaten and the negative health thoughts had been gone. Try to get back to that place.

the nature of HA makes us feel like it’s ALWAYS real and NEVER just in our head. That’s what you have to get past, don’t let your brain trick you into thinking it’s real.

Cmartz2
20-08-21, 01:13
I appreciate the support @glassgirlw something just feels off. My throat seems like it’s very weak and my tongue feels stiff. Idk what’s going on

Cmartz2
22-08-21, 18:42
This really sucks. I hate feeling this way. Got out of it and now am back in. Can’t afford to go back to therapy. Ate lunch today and just felt weak the whole time. My throat feels like it’s struggling to get food down and my mouth feels like it can barely chew. I just feel like there is no end to this

jojo2316
22-08-21, 22:35
So I’ve had this feeling of mouth tiredness when chewing. It came on after I started worrying about bulbar onset als. I googled it and things like TMj came up but nothing on als. So then I googled mouth tiredness + als (I know! I suffer from HA) and what came up was people who didn’t have als, worrying about als (on als forums). That should tell you everything you need to know I reckon

pulisa
23-08-21, 08:04
So I’ve had this feeling of mouth tiredness when chewing. It came on after I started worrying about bulbar onset als. I googled it and things like TMj came up but nothing on als. So then I googled mouth tiredness + als (I know! I suffer from HA) and what came up was people who didn’t have als, worrying about als (on als forums). That should tell you everything you need to know I reckon

Yes it does but does it stop the urge/compulsion to google? What would stop the need to google?

jojo2316
23-08-21, 12:27
Yes it does but does it stop the urge/compulsion to google? What would stop the need to google?

Ha! And that there is the million dollar question! Xx

pulisa
23-08-21, 13:42
Do you want to stop googling? What does Dr Google give you that a consultant neurologist doesn't? Additional information to cover all eventualities? A second opinion? A source of torment which you need because you don't believe that you are healthy?

Sorry for the tirade of questions! I know it's basically self-sabotage which we all do ..frustratingly xxx

Cmartz2
23-08-21, 17:48
I agree that google sucks. I think we can all agree there. I just don’t want to go to a neurologist if I don’t have to. So of course I trade that for google

pulisa
23-08-21, 17:57
Why "of course"? Why is google a natural substitute for a face to face medical assessment which is geared towards you and your symptoms, not a whole raft of randoms who mostly are the worried well?

Cmartz2
23-08-21, 20:16
The best answer I have right now is that I don’t have the money

pulisa
23-08-21, 20:38
The best answer I have right now is that I don’t have the money

But what price Dr Google in terms of ramping up your anxiety? Is it worth it?

pulisa
23-08-21, 20:40
I think you would find the money from somewhere if you were really convinced that you needed to see a neurologist? You wouldn't be wasting time with google.

jojo2316
23-08-21, 20:51
Ps I didn’t mean to hijack this thread. I was just wanting to point out that “mouth tiredness” is a symptom that people who WORRY about als get. It’s not a recognised feature of als.

As for my own google habit- Pulisa you are completely right to pull me up on it. It’s an OCD thing, I think? A bit like hair pulling. But perhaps it is also more complex than that. I shall ponder….

Cmartz2
28-08-21, 19:14
Was eating today and struggled to open my mouth. My throat began cramping

Cmartz2
27-11-21, 01:23
Starting to go back down the hole with my hand again. It’s definitely weak. My fingers sort of stick together. My grip is off and my writing has declined. This first started last year then went away and thought I had bulbar now it’s back to my hand but this time it seems real. Like my hand is actually weak at this point

Cmartz2
28-11-21, 22:38
Not sure anymore. I know I have been on here for a while. My right hand is bad. I had troubles zipping something today and my
Grip is weak. I can tell my wrist is weak.
I’m getting scared. This isn’t like last time

jojo2316
01-12-21, 22:52
We seem to be running down similar tracks, you and I. I’m also a long term als worrier. And recently I’ve started to worry about/notice left arm weakness. I can’t keep my left wrist straight while holding a 6kg weight for very long, but I can on my right. I also get twitches in my left forearm. This sucks doesn’t it?!

Cmartz2
14-03-22, 21:21
Didn’t think I would be back here again. Stayed away for a while and kept busy.

Sadly, the symptoms have returned but more aggressive. I have been dealing with more tongue twitching and throat twitching/spasms.

My voice hasn’t changed to sound like I’m drunk but I would say those other two symptoms aren’t very good either

Cmartz2
20-03-22, 21:42
Really going through it today.

My brother told me about a guy we grew up with who is only 30 was just diagnosed with ALS.

My tongue is twitching a lot more. My throat is Twitching and spasms. My vocal cords feel weak.

Crap day that seems to get worse as each day goes on even after a year

Cmartz2
20-03-22, 21:45
Also, why does ALS seem to be coming so much more frequent with younger people

Hypo84
22-03-22, 15:59
You do realize that statistically this can't be the ALS right?

First, you have opened this topic over a year ago, and so the explanation is that it wasn't als back then even though the symptoms were similar, but less intense.

You are not contemplating much much much more likely scenario that your brain (anxiety) caused the symptoms over a year ago, and now it's causing them once again?

Getting struck by a lightining has much higher likelihood than you having this disease.

Cmartz2
24-03-22, 22:59
Thank you @Hypo84

I hate feeling this way and feel like it’s happening. I hate going back into the hole