View Full Version : ALS worry
Hi guys, I'm from Australia and I'm just about to turn 25 next week on Wednesday, I've been experiencing some troubling symptoms , I've posted on the ALS forum and got kicked off of it because I could not believe them when they said it's all anxiety and in my head, I've been to 4 different Doctors who have also said that it is severe anxiety! I'm going back today. It Started about 3 months ago, thought I had stepped on a syringe which made me think I may have contracted hiv, tests where done and It came back negative, for some reason about 3 weeks later my fiancé got sick (early hiv symptoms) and I went in a massive spiral, and that week I got an infected bursa sack in my knee, which somehow made me think I deffinety had hiv, that weekend I was driving with the fiancé mucking around and I was singing at the top of my lungs got hot and cold flushes and felt like I was going to black out, it's happened about 4 times with in the last 6 weeks. since that day my head has felt weird as if I have brain fog and my vision has been really bad like everything in my peripheral vision is shaky the next day I went to the movies and my legs felt really heavy as tho they weren't there, and very jerky. Since then I've had severe muscle twitches started in my right calf and a couple days later jumped to my left calf and over the last 2 weeks they have jumped to my arms mainly my biceps, the ones on my legs feel like small electric shocks/tingling and the occasional big twitches, they sometimes happened in both legs at the same time, which has gotten me extremely anxious, Also my legs feel awkward when I walk started in my left leg and now both feel awkward and feel clumsy and my arms feel really uncoordinated, and I occasionally see my nerves getting activated after I've used my hand, and now my right hand is stiff mainly my pointer finger, now today I woke up with my left shoulder feeling extremely heavy and limp, Also the last couple of days my tongue has felt real heavy as tho as it gets real tired but today it has been fine, and some nights I wake up with my tongue feeling numb/ the feeling that I burnt it on something hot but that feeling goes away with in 30 seconds. I've been extremely fatigued for about 6 months prior to this aswell, I've also had severe anxiety about 2 years ago in regards to me having ms, had all the symptoms associated but everything was clear and since then every little thing I notice on my body gets noticed and I end up on google! This has literally driven me crazy, just wandering if my nervous system could be so stressed by anxiety which has caused me to make my legs and arms so sensitive to movement? I have also been fairly shaky. Also my cheek muscles seem to quiver by themselves. Just want to no of ALS could affect all my body basically all at once and so quickly? Honestly going crazy! Sorry for the massive ramble!!!
---------- Post added 21-11-16 at 01:23 ---------- Previous post was 20-11-16 at 23:07 ----------
Anyone?
Yeah, been there, done that and bought the t shirt.
Trust me mate. You don't have ALS. There's a reason why you've been kicked off the ALS forum, there's a reason why 4 doctors have dismissed it as Anxiety.
It's because it's anxiety and nothing more. If the doctors thought it was actually
Something more serious then they would've taken you through the proper tests etc.
For a period of around 4 months I had CONSTANT muscle twitching in my calves and sporadic twitching elsewhere. I also have a left thigh which is significantly smaller than my right.
The 1 thing I don't have is clinical weakness. I can do everything I could before I got anxiety. If you can still tie shoes, turn Keys, pick up pennies off the floor, stand on your tip toes and heels then you DO NOT have clinical weakness and therefore you don't have ALS.
Yeah I know I'm just really struggling to get my mind off of it! Went to the GP today and the doctor told me we have to options one is to go see a neuro to get my mind at ease or 2 to go and see a psychiatrist to try and resolve it there, I went with the Neuro appointment, the original neuro my doc referred me to is booked out until early next year and I couldn't wait that long then the reception lady said that another one of the neuros has had a cancellation for this Wednesday I honestly wasn't expecting it so soon!
In regards to clinical weakness I can turn keys pick up pennies with both hands stand on tip toes but they get shaky pretty quick and when I stand on my heels I can't keep my balance for long? I can walk in heels and my tip toes. Just seeing how everyone's balance is in regards to standing on there heels?
Thanks for ur response mate
Just sucks that I've been extremely clumsy lately and uncoordinated and shaky through legs and arms!
Those aren't the symptoms of ALS. They are the symptoms of stress. ALS is also such a super-rare disease that it shouldn't really be on anyone's radar as a plausible concern.
It's absolutely correct you're thrown off an ALS forum. They're for the people who have been unfortunate enough to be diagnosed, not for we health anxious types. To be blunt, they've got much bigger things to worry about than placating people worrying irrationally over stress symptoms.
And please stop Googling - you'll just reaffirm your worst fears through selective searching, and we aren't qualified to understand the information we're reading.
---------- Post added at 09:37 ---------- Previous post was at 09:35 ----------
In regards to clinical weakness I can turn keys pick up pennies with both hands stand on tip toes but they get shaky pretty quick and when I stand on my heels I can't keep my balance for long? I can walk in heels and my tip toes. Just seeing how everyone's balance is in regards to standing on there heels?
I think Colicab was talking generally, not giving you a diagnostic test to do. And people's balance varies, I'm not sure I'd be very good at it.
My balance is terrible when standing on my heels.....theres a reason for this though, its not a usual position for us to stand in. A loss of balance is not an indicator of ALS. The fact that you can stand on your heels AT ALL is the significant part. Balance is irrelevant.
An ALS patient will present with a fist that cannot clench, a thumb and index that can't pick anything up or a big toe that won't point upwards. It does not present with "feelings" of balance issues and twitching.
Do you know what does present with those symptoms and others....Anxiety!
Yeah standing on my heels are terrible aswell, I know it's just that the awkwardness started in my left leg and now it's in my right leg not limping or nor have I fell over, it's just now over the last couple of days my arms near my shoulders felt really tired and they shake like crazy I've even had trouble operating my phone in my right hand feels so heavy and my dexterity has dropped dramatically! I can't get this out of my head I'm honestly terrified I'm getting married in just over 14 months, and I've honestly pushed my fiancé to the absoloute limits she's even said u need to stop this or ur going to loose me! My cheek muscles are now quivering and the muscle In between my thumb and my index finger and now my left foot, this is making me feel sick in the stomach thinking that I have ALS
With respect... As I told another ALS worrier, posting on ALS forums to the point of being banned is disrespectful beyond words. It's the same as I encountered on the cancer forums.
I followed such a poster here a few years ago and ended up staying to try and help. So what's helpful in me saying this?
If a cyber-slap upside the head in addition to the fact that you're risking all the good things in your life (like your fiance) due to an irrational fear caused by HA promts you to get help, then it's a positive.
You obviously don't have ALS but it's also very obvious you're suffering from severe HA over it. Getting treatment for the real illness will help treat the symptoms associated with it.
Good luck and as always...
Positive thoughts
I know and I feel ashamed I just feel as tho that it must be it, and no one is willing to believe me. I know I feel so lost at times knowing that I could lose the love of my life due to anxiety and or ALS! I just don't understand how my hands arms legs can all feel clumsy really awkward when I use my phone awkward when I walk, possible atrophy on left leg, can anxiety really screw around with ur nervous system that much that it actually affects with my day to day living just holding my phone in one hand for to long and my hand gets weak! Whats worst is that everything seems to be getting worse day by day! And these twitches doing my head in!
I'm so scared for the neuro tomorrow just in case I get news I don't want to hear :'(
I know and I feel ashamed I just feel as tho that it must be it, and no one is willing to believe me. I know I feel so lost at times knowing that I could lose the love of my life due to anxiety and or ALS! I just don't understand how my hands arms legs can all feel clumsy really awkward when I use my phone awkward when I walk, possible atrophy on left leg, can anxiety really screw around with ur nervous system that much that it actually affects with my day to day living just holding my phone in one hand for to long and my hand gets weak! Whats worst is that everything seems to be getting worse day by day! And these twitches doing my head in!
I'm so scared for the neuro tomorrow just in case I get news I don't want to hear :'(
As someone that has been experiencing a multitude of weird and wonderful neuro symptoms (headaches, twitching, constant shaking, balance issues, dizziness) that the doctors are all putting down to my mental health issues the answer is a RESOUNDING YES!
Anxiety and Stress can ABSOLUTELY cause everything you have and are experiencing.
What kind of anxiety medication are you on? And if you're not on it, get on it, asap. You have severe, severe hypochondriasis.
I'm on nothing I'm scared that it won't fix the problem and puts me in a positive diagnosis of ALS! I know it sounds stupid I'm just so scared, my left knee feels more awkward when I walk now and my right hand locks up sometimes! Honestly petrified from this neuro appointment! Had a nightmare last night which woke me up at 1 am and I was diagnosed with it! Now my stomach muscles are starting to twitch! I'm only 24 years old! :'(
Yeah. But you don't have ALS.
I just cannot understand as why you have to be so bloody cruel,to someone who is in need of help,your comments are not helping and it seems to be the same people all the time on similar threads..:mad:.
Who?
I thought I gave pretty solid advice. :weep:
I just cannot understand as why you have to be so bloody cruel,to someone who is in need of help,your comments are not helping and it seems to be the same people all the time on similar threads..:mad:.
Help is "relative". Being direct, which in this case is the only way to be IMO, or offer tea and sympathy, which is this case, even the slightest bit would feed the beast... again in my opinion.
The ALS Rabbit Hole is one of the worst I've seen on the boards and the OP is deep and stuck. He doesn't have ALS and this fear has the potential to ruin his life.
So in this situation, again, I don't see being direct to be cruel in the least as it's the truth. Hopefully the OP will seek help with his anxiety so he can learn to overcome the irrational responses to normal everyday physical niggles.
Positive thoughts
Went and saw the neuro yesterday, got what I was looking for "what your experiencing is due to your severe anxiety" and that he's "99.9% sure that it's not ALS" but as I left the appointment I forgot to mention the possible atrophy to my left leg and calf. And my constant shaky feeling thought my legs and arms and the fact that even the smallest amount of excercise I get extremely sore and didn't really tell him how my twitchers where. He said for my reassurance and peace of mind if I wanted I could book an emg but it's not necessary.
I've booked it but not 100% sure if I really wanna go through with it! Still waking feeling sick in the stomach thinking I've got something like ALS!
Went and saw the neuro yesterday, got what I was looking for "what your experiencing is due to your severe anxiety" and that he's "99.9% sure that it's not ALS"
Game. Set. Match! Now, go get help for your anxiety.
Positive thoughts
MyNameIsTerry
24-11-16, 04:59
You are chasing a diagnosis and I think doctors should be firm with people with HA, not give them reassurance-seeking tests or leave them with hooks that only feed their doubts.
If 99.9% isn't enough and all these experienced doctors then do you think even a 100% will be good enough? If it were, it won't be an anxiety disorder to me because they don't simply dissappear, thinking has to change at conscious & subconscious levels and both take time.
When this comes back saying you still don't have what you fear, what then? Your anxiety is likely to try another route by undermining whether the test was conducted correctly, could there be errors in the test itself, did the doctor read the results right, etc. That's how anxiety works.
So, regardless of all these pointless tests your doctor should be encouraging you to take steps in your mental health.
Meds are a possibility but that's up to your doctor to determine as they have assessed your anxiety severity, no one on here can do that on the strength of this thread but continuing to change doctors should prompt them to consider how the obsessive element is impacting and feeding the disorder, but it's about more than that. Therapy is one that is needed regardless. It depends if you need support or can challenge your thinking.
In my experience I don't think an EMG is worth it. They hurt like hell as a start I gather.
Speaking from experience, I had a brain MRI done back in June. Still hasn't totally cured me of my anxieties around brain aneurysms and tumours.
I honestly wouldn't bother.
MyNameIsTerry
24-11-16, 12:02
In my experience I don't think an EMG is worth it. They hurt like hell as a start I gather.
Speaking from experience, I had a brain MRI done back in June. Still hasn't totally cured me of my anxieties around brain aneurysms and tumours.
I honestly wouldn't bother.
Doesn't sound worth it to chase that elusive 0.01% that a neuro doesn't believe it's worth bothering with but sadly opened the door to. Are they being paid by any chance?
All-or-nothing thinking is a problem for do many of us. Been there, done that.
Yes there are definitely differing views here about what constitutes being nasty and what constitutes being direct. The problem is that some people think that the two go hand in hand.
A bigger problem is people who come here and diagnose. Almost all of us are here because we have had some kind of HA experience. My experience with HA is probably different to someone else's experience. What worked for me in terms of overcoming HA may not work for someone else. There are no experts here. No psychiatrists. No psychologists. Just people sharing experiences.
Doesn't sound worth it to chase that elusive 0.01% that a neuro doesn't believe it's worth bothering with but sadly opened the door to. Are they being paid by any chance?
All-or-nothing thinking is a problem for do many of us. Been there, done that.
It's a big problem for me, its either a brain tumour or nothing!
But yeah...ALS isn't subtle. A neurologist has gone through years and years of training to know what a true ALS patient looks like. They will know the subtleties and nuances and they will know that it doesnt come in with sproadic twitching.
They offered the EMG for nothing more than to try and offer you peace of mind that the negative results will ease your fears. In my experience this isnt the case. Hence when I don't think it is worth pursuing the EMG. I would pursue therapy.
Honestly thank you to everyone who has commented on this thread! I'm still having trouble thinking that it's the anxiety! I've been more shaky over the last couple of days hands legs etc and been getting this weird numbing/ weird feeling sort of like vibrating of shaking on my left leg face top of head etc it just comes and goes and my sleep is still terrible, waking up at least 2 or 3 times a night and when I do I feel as tho my body is shaking /vibrating internally! And over the last couple of days my throat feels really tight and when I try to swallow its as tho as its blocked.
Seems as tho as every passing day it gets worse!
MyNameIsTerry
25-11-16, 06:52
Vibration in the limbs, the hands, the fingers, chest, stomach, feet, toes, etc are all known in anxiety. I've had it all over dating back to when my breakdown came around 10 years ago!
You tend to find that it disappears when you get up and move around.
And tight throats are one of the big common symptoms with anxiety too.
There must be hundreds of threads on here about these symptoms.
Thanks everyone for ur replies it honestly kept sane over the weekend, just something that has gotten worse is the tightness/swallowing problems when I'm swallowing food, water or even saliva it's as tho as it feels as it gets stuck, and it has a slight burning sensation when I've been burping. Today after breakky I had to cough and I burped up a bit of the scrambled eggs and it was as tho it came from the back of my throat. And it's as tho I am struggling to breathe sometimes and it's as tho my breath doesn't go down to my lungs and it just sits at the top of my chest. This has honestly scared me today!
Three months of untreated ALS and you would be in a bad way. It is not a slow disease. You would not be here typing away, you would be really, really sick.
I have experienced every symptom you mentioned, all at once, for the better part of a year when I was dealing with generalized anxiety. Your body is making and dumping adrenaline into your system like you were being chased by saber tooth tigers all the time, it is natural to feel what you are feeling.
You need a therapist, and to learn some cognitive behavior therapy. I would dare say, it would serve you well, probably, to stay completely off the internet, even here.
---------- Post added at 01:35 ---------- Previous post was at 01:32 ----------
To add to MyNameisTerry's answer a bit, get up and move around. For the love of all things holy, even if you don't want to, GET SOME EXCERCISE.
Nothing helps burn that adrenaline out better than a good workout. Anything to pause the brain and work the body. When you don't think about the symptoms, you begin to realize you aren't noticing them.
I have just been so shaky lately pushing the wrong button on my phone etc, my vision has been the worst it's ever been making me go into a daze after staring at something for legit 10 seconds maybe less my head feels like it's not keeping up with me I'm constantly fatigued aswell! . And all these other symptoms that I have written aswell has put me into a massive spiral! Especially now my throat and swallowing issues.
Honestly sucks I go to bed feeling like this and wake up like this! I haven't been my normal self for about 2 months!
Today has been terrible had literally no sleep last nightj constantly tossing and turning and my arms and legs felt so weird. Perfect way to start off my 25th birthday. :/ I'm a painter by trade and now my right hand has been much more stiff going into my other fingers after I use the brush for to long and I've been getting pain in my hand like it's being over worked and if I run my legs feels so sore like I haven't done excercise in a while! Honestly going crazy on my birthday :(
MyNameIsTerry
30-11-16, 04:48
Happy birthday :birthday1::birthday:
When I went through insomnia and tons of poor quality sleep I was shaky, nauseous, weak, aching, etc. Anxiety magnifies all this too.
It doesn't mean you have what you fear though, just that you are learning about how bad anxiety can affect you.
Happy Birthday.:D.
I don't get much sleep and today I have had the rattles up all anxiety Porko.Enjoy your birthday,don't sit around worrying,go to the pub and have a cuppla schooners.xx.
Also remember, it's the fact that you can paint at all that points away from mnd. Pain and stiffness are hardly ever the first sign.
Thanks guys, had a good day even if the beginning of the day was terrible! I just don't understand how anxiety can do this! Woke up this morning with a dead/ numbing shoulders as if I had to get circulation through them now they feel so heavy and week they where shaky as well as like they where struggling to be in that position! And now my shoulders seem so much more twitchy then normal :(
Also has anyone experienced any vision troubles? I've had vision issues for about 2 months now everything seems shaky and I can't focus properly!
Nearly ever person with Anxiety tells of vision problems.
Also, vision has absolutely nothing to do with ALS.
If you had ALS and woke up with a numb shoulder because of it you would still have a numb shoulder now. As I posted elsewhere a neurologist who used to visit here described ALS as a disease that does not have good days and bad days. Once it starts to affect you it just gets progressively worse. All the symptoms you describe I have had. The internal vibrating had me convinced that I was afflicted with a serious nervous system disorder. I wasn't.
You'll get over being convinced you have ALS (we all do) but your peace of mind won't last. Not if you truly have HA. Soon after accepting you don't have ALS you will think you have some other serious disease. Go and see a counsellor before your HA takes over your life.
---------- Post added at 18:32 ---------- Previous post was at 17:52 ----------
I was just trying to think back to my muscle twitches. I went on a picnic and we were throwing the frisbee around. Later that night I was sitting watching a movie and my shoulder just started twitching. It wouldn't stop. I hopped on board the MS train that night and experienced the constant twitches, numbness, tingling, vision problems etc etc and everything else I read on Google. It was mostly inaccurate. Of course the most logical explanation was that I had caused some kind of injury throwing and catching the frisbee which was exacerbated by my tense muscles. But I was way past being logical by then. My guess is so are you.
numbness has nothing to do with ALS either, as ALS affects the motor neurons, not the sensory ones.
Yes I know it's got nothing to do with sensory feelings, but it's scary last night was the first night I had an uninterrupted sleep in about 2 months. It's just that my hand doesn't seem to be getting any better it's just really stiff and shakes like crazy using my phone in one hand etc. now I just checked my tongue and now when I poke out my tongue the side of it quivers then stops then goes again. It's like it's shaking in that little bit of tongue.
The muscle twitches are becoming more frequent in my arms.
And it's not what I wanted today especially after actually feeling alright this morning.
MyNameIsTerry
02-12-16, 04:59
Shaking is common in anxiety though. Think about someone having a shock due to an event (perhaps they were attacked) wouldn't you see shaking to be normal in someone like that?
Have you ever seen old people who "suffer were their nerves", an old terminology, because they are frightened a lot? They would have shaky hands.
And it's quite possible to hold something in a certain way that exposes a weakness in musculature. That doesn't mean illness in any form, but a lack of balance in body strength when smaller less used muscles come into play. Holding your phone at a certain angle can account for that in some people.
Have you read what people in this thread have been saying to you? You don't have ALS because you wouldn't have been "feeling better" this morning. There are no good periods with ALS. Now you are studying your tongue. Why? Go and see a counsellor and stop torturing yourself.
I just don't understand how anxiety can do this!
That's what a lot of us struggle with. Even being told that anxiety can and does cause all these symptoms... we just can't hop on board and "believe" it.
Personally, once my body hits full "anxiety state" with the panic you are describing, it takes a month or more to return to a "normal state" when the symptoms wane. So even if you start to feel better in a couple weeks... you may still feel strange symptoms as your body recovers.
It's a terrible state to be in, as you know. You are not alone. Definitely seek some help from a mental health professional. It will start you on a better path.
When I said feeling better, I meant my head didn't feel weird of anything different at all, my symptoms on my body seem to be getting worse everyday, holding my phone as I type this my shoulders are so heavy, more still eski up every night with dead hands, arms etc. I've got my emg on Thursday morning and I'm terrified now that the only news I'm gonna get is very bad news! I feel numb like ive already accepted the fact that I have some serious neurological disease.
That's the only thing that is keeping me sane at the minute knowing that blurred vision isn't a symptom.
My coordination is still bad I used to have really good reflexes when it came to catching a ball and now my catching the ability with one hand is completely off even when bouncing a ball.
Last night every time I woke up, and when I moved it felt like it was jerky movement through out the movements if that makes any sense.
And now my twitching has spread to my arms, now back occasionally and stomach occasionally as well.
I've been to 4 different Doctors who have also said that it is severe anxiety!
Nuff said....
Positive thoughts
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