View Full Version : So much to say
Hello everyone I'm new to the forum and I'm also a late anxiety zone refugee! I see my good friends josh and Hancock made it hear and I've been glancing through the feeds as a guest and I've officially become a member.
I'm unfortunately in a time of person crisis!
My journey with health anxiety start in August 2015 the day after I moved into university, I had a body wide rash and there were only three things doctor Google said it could be... Syphilis, Hand foot and mouth, and AIDS.
Well I though I had AIDS.. I really had hand foot and mouth actually.. This fear last some time until December 2015, but the. My fears turned to lymphoma until the big dreaded fear that has lasted from January 2016- until the present.... ALS...
I was 18 then and now not a month over 20 I still think I have ALS I was panicked over perceived atrophy on my left hand between my thumb and forefinger and I still think it's atrophying...
But what's more worrying is now for almost six months I think I have bulbar ALS.
1. I think I'm having trouble pronouncing words specifically fascists, sixth, masked, fourths. Most words end in -ists, or -sts. I don't know why
2. I don't know if this happens with ALS but I'm sure my tongue doesn't come out of my moth straight and deviates to the left... I stick my tongue out so many times a day comparing it. I don't know if the whole tongue is weak or if it's just one part of the tongue in bulbar ALS.. I'm just so scared.
3. Finally I feel like there's liquids going up my nose when I drink... Nothing comes out of my nose but it does run sometimes when I drink and eat... I don't know if this is weakness at all..
4. When I talk my tongue is behind one front tooth more than the other I don't know if the tongue is weak and deviating.... I think I do have undiagnosed TMJ because my jaw does click a lot and all but I'm not sure if my jaw is just misaligned.
That's all I believe I have never been to a neuro though my family just says everything is anxiety and will never take me... Any comments would help. Thanks y'all.
:welcome:
I don't know much about ALS, but I've never seen any person on AZ or this site who've thought they've had it and they actually did. So statistically, I don't think it's anywhere near likely that you have it.
I'm in your boat man. I'm actually really glad you mentioned the pronunciation thing!
Are you like me? You feel like you DEFINITELY aren't pronouncing words right, but everyone says you are?
That is me right now. The rational part of me says I know it is because I've been hyper aware of my tongue placement in my mouth, and I've been clenching my jaw so hard I can barely chew. I think that is where my (perceived?) difficulties come from.
I can tell you with near certainty, though, that neither of us has ALS!
The anxiety still kills me though :\
I just don't understand why these things are happening.. Like can all this happen to a 20 year old. The tongue deviation really scares me...
WiredIncorrectly
10-06-17, 21:06
Go to your doctor and tell him you're having intrusive repetitive thoughts. That's what these are. To the outsider like myself reading this it sounds utterly absurd. But, as someone who suffers health anxiety I know I too can be just as absurd (check my post history). It's just today I'm having a good day.
These thoughts are not normal. I would bet my life you're fine. Speak to your doctor about them though. He can suggest alternative treatment/therapy.
Can this all be anxiety though? I don't understand why everyone just says its anxiety and that's it.
WiredIncorrectly
10-06-17, 22:09
Can this all be anxiety though? I don't understand why everyone just says its anxiety and that's it.
You're self diagnosing jumping from one diagnosis to the next. You're overthinking and obsessing over having one of these illnesses that you likely don't have. Sticking your tongue out comparing it throughout the day is not normal. That's health anxiety. I have it too.
Last year I thought I had cancer because of inflamed lymph nodes in my neck and ground. I remember measuring one about 50 times a day with a ruler, protractor, all sorts of home made measuring devices to get an accurate measurement (no joke), making marks over my skin to compare the size the following day. I did this constantly. One day I just stopped doing it and never gave it a second thought. This was over 12 months ago, I'm still alive and well. Must have been nothing lol.
Many people experience health anxiety as a form of OCD. That's why you get the intrusive thoughts that something is wrong with you, as wired incorrectly is saying.
But the tongue deviation is real how can it not be seen. It isn't like I wanted this I just noticed, like does the tongue deviate in ALS?
Please Read This (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughst
tryingtosurvive1
11-06-17, 04:25
dude you have bad OCD. You've gone from hands to bulbar. This is the classic fear trajectory! It's all over aboutbfs.
I can't remember, are you in therapy? at all?
I do think maybe one trip to a neurologist would be worth trying for some peace of mind. But I doubt it will be enough given the extent of the obsession.
MyNameIsTerry
11-06-17, 04:45
But the tongue deviation is real how can it not be seen. It isn't like I wanted this I just noticed, like does the tongue deviate in ALS?
Real to who? An anxiety sufferer with tunnel vision over their current context or a trained doctor with no emotional biases?
If you're asking whether it's possible in ALS then you can't know everything about it to rule in or rule out your symptoms.
Is this trying to survive from anxiety zone? And I looked up photos online and there's a few slight once that look so similar. I've lurked the ALS forums for 16 months. And I'm worried about my pronunciation like sts endings like posts, fascists, and other words like north shore and south side. Like the th sound and words like asked I feel like I'm not pronouncing it right.
tryingtosurvive1
12-06-17, 02:39
yeah, it's me.
look, I actually have some muscle wasting now from Charcot Marie Tooth (though I am still fully functional) and I basically manage to resist the thought I have ALS. I have never thought you had any neuromuscular condition, "just" OCD.
How is therapy? Are you still pursuing it?
Yeah kinda.. I'm not worried about my hand though I'm worried about bulbar symptoms. My tongue protrudes sideways and I'm having trouble pronouncing s's and no one has ever taken my concerns seriously or taken me to a neuro....
Yeah kinda.. I'm not worried about my hand though I'm worried about bulbar symptoms. My tongue protrudes sideways and I'm having trouble pronouncing s's and no one has ever taken my concerns seriously or taken me to a neuro....
The thing that has been helping me with this thought most recently is..
of all the stories you read, how many people's stories include "the doctors never took me seriously. nobody else thought anything was wrong with me."
No doctor, no person, NOBODY AT ALL other than ME at any point has thought there was a little bit of anything wrong with me. Come to think of it, that is reassuring as hell that there isn't anything wrong with me.
You gotta be kidding me, dude. Still with the ALS stuff. Some people are DEAD in the time I've seen you post about being scared of ALS. I really think you need to see a therapist about this. You have an ALS phobia and it needs treated.
The really scary thing for me is that when I stick my tongue out the middle line isn't right on the line made by my two from teeth.. the tongues line is off to the side...
Dude, no one has bulbar at age 20 lmao
WiredIncorrectly
12-06-17, 08:22
You gotta be kidding me, dude. Still with the ALS stuff. Some people are DEAD in the time I've seen you post about being scared of ALS. I really think you need to see a therapist about this. You have an ALS phobia and it needs treated.
I agree with everything Josh said.
Dude, you have to stop now. You do not have ALS. I suggest whenever you think about ALS you ignore it. Don't post online. Don't google.
You are the only person that can stop this thinking and the longer you continue to think like this the worse you'll get.
---------- Post added at 08:22 ---------- Previous post was at 08:21 ----------
The really scary thing for me is that when I stick my tongue out the middle line isn't right on the line made by my two from teeth.. the tongues line is off to the side...
Stop!
In due time you will look back at this post and think to yourself "what the hell was I thinking?!".
Please Read This (http://www.nomorepanic.co.uk/showthread.php?t=196071)
Positive thoughst
OP, please read this post again.
It's always common here, but there has been a bit of a surfeit of ALS fearers on here of late, and as with every "trend" on here I worry people are unconsciously fuelling each other by "swapping notes" - not their fault, just the way things work when many people at the same stage arrive with the same fears.
There's only so many times we can say:
ALS is very very very (very) rare in younger people.
ALS doesn't present in the way most people seem to think it does.
It is a dramatic illness, not one where you're wondering about little vague symptoms over a longer period of time.
It is not something you have to be constantly vigilant about.
This forum probably gets on average something like a new ALS-fearer every day. I don't think any of them have ever actually had it.
If you can read Fishmanpa's post without starting to put the fear to bed, then it's probably time to seek some therapy because this is an irrational fear and a rabbit hole you can get very lost in. Good luck.
Yeah I know what you mean it's just no one ever took me to get an EMG... And I've been worrying about bulbar for about 6 months now I'm scared its progressing... No one has ever taken me seriously honestly about this at all
No one has ever taken me seriously honestly about this at all
Perhaps because there's nothing physically serious to be concerned with?
Positive thoughts
Yeah I know what you mean it's just no one ever took me to get an EMG... And I've been worrying about bulbar for about 6 months now I'm scared its progressing... No one has ever taken me seriously honestly about this at all
Why would they? You don't have anything to be taken serious. Besides anxiety, of course.
I think I have bulbar though I read online about a 20 year old who had bulbar ALS too.. I repeat all these words I think I can't say hundreds of times a day to see if it improves or not.... And I stick my tongue out so many times to see if it's deviating...
I think I have bulbar though I read online about a 20 year old who had bulbar ALS too.. I repeat all these words I think I can't say hundreds of times a day to see if it improves or not.... And I stick my tongue out so many times to see if it's deviating...
Where'd you read that? Odds are it was familial ALS. The youngest I've ever heard of having sporadic als is stephen hawking tbh. I dont't think I've heard of ANYONE under 25/26 having sporadic ALS, and I have read A LOT.
---------- Post added at 03:08 ---------- Previous post was at 03:05 ----------
I think I have bulbar though I read online about a 20 year old who had bulbar ALS too.. I repeat all these words I think I can't say hundreds of times a day to see if it improves or not.... And I stick my tongue out so many times to see if it's deviating...
Look mate I am in the same boat as you right now, except I did have an EMG. Everything is exactly the same except the tongue deviation. This made me feel a bit better, too.
https://youtu.be/3Se5p9LwmCk
Every story i read about bulbar ALS, people said something came up on their clinical. This is how a clinical exam is performed. Can you do the things in the video?
MyNameIsTerry
13-06-17, 04:13
I think I have bulbar though I read online about a 20 year old who had bulbar ALS too.. I repeat all these words I think I can't say hundreds of times a day to see if it improves or not.... And I stick my tongue out so many times to see if it's deviating...
That compulsive behaviour will just keep you in the cycle. Have you discussed this, and the rest, with a therapist?
I could see a therapist recording you saying these words to prove (in playback) that you are misinterpreting how they sound compared to what a doctor is hearing. If it's easy to think this way with obsessive disorders just like those who are seeing something different on their bodies than everyone else is.
That compulsive behaviour will just keep you in the cycle. Have you discussed this, and the rest, with a therapist?
I could see a therapist recording you saying these words to prove (in playback) that you are misinterpreting how they sound compared to what a doctor is hearing. If it's easy to think this way with obsessive disorders just like those who are seeing something different on their bodies than everyone else is.
Agreed. 100%
What help are you getting for your OCD?
That compulsive behaviour will just keep you in the cycle. Have you discussed this, and the rest, with a therapist?
I could see a therapist recording you saying these words to prove (in playback) that you are misinterpreting how they sound compared to what a doctor is hearing. If it's easy to think this way with obsessive disorders just like those who are seeing something different on their bodies than everyone else is.
When in doubt, I just record myself saying it. Absolutely blows my mind because listening to the recording, it is exactly what I expect. Hearing it come out of my mouth is a totally different story.
I haven't been able to be physically active for reasons I talk about in my thread, but guess what. I ignored the doctor for a day because I NEEDED to get out and do something. Played some basketball, and there was nothing wrong until I came home and started fixating on it.
You should definitely get help. I realise not everyone is in the position I am where you can to from doctor to doctor and always have a therapist and access to meds, but really any authority figure will make you feel better.
When I told my doctor I felt like I couldnt talk today he just looked at my tongue real quick, (and knowing how long I've been struggling with this), just said "we should get you on some medication"
EDIT: my doctor said there is certainly a solid layer of OCD on top of my anxiety. he gave me a low dose of zoloft for this, only 25mg. he said it should be low enough that i dont notice a difference in how I feel, but i should hopefully be able to repel the repetitive thoughts.
Another thing is whenever I eat spicy or mint flavored foods I can smell them in my mouth, and they burn my nose like the smell is coming into my nose. Idk if this is swallowing regurgitation of not...
Another thing is whenever I eat spicy or mint flavored foods I can smell them in my mouth, and they burn my nose like the smell is coming into my nose. Idk if this is swallowing regurgitation of not...
Sorry if you've already said, but have you seen a therapist about health anxiety?
MyNameIsTerry
13-06-17, 17:03
Another thing is whenever I eat spicy or mint flavored foods I can smell them in my mouth, and they burn my nose like the smell is coming into my nose. Idk if this is swallowing regurgitation of not...
I suspect it you couldn't, it would be more of an issue to consider.
I used to go an anxiety specialist a long time ago, but I had to cancelled several appointments due to school and they never returned our calls. I don't think it is the anxiety specialist I need but rather the EMG and a neuro because I never saw one..
I used to go an anxiety specialist a long time ago, but I had to cancelled several appointments due to school and they never returned our calls. I don't think it is the anxiety specialist I need but rather the EMG and a neuro because I never saw one..
You've been worried about ALS for two years! In that time I'm fairly sure you'd be severely disabled.
But no logic thrown at you is going to shift this one - yes I'm afraid it is a mental health professional you need to see, because there is no sense to this fear, and your refusal to accept that isn't going to be influenced by anyone on here. Please see someone.
I've only been worrying about bulbar ALS for just under six months. I'm trying to let it go but it's so difficult..
You are 20 years old worrying about a disease that 20 year olds don't get. Yes, you do need a therapist.
I've only been worrying about bulbar ALS for just under six months. I'm trying to let it go but it's so difficult..
Your OP says you've feared ALS for two years, since you were 18. So you think had an irrational fear for 18 months about a disease you didn't have, but then in the last six months you actually got it?! You know that's rubbish.
As Josh says, you're wasting your youth worrying about something that has about the same odds as a big lottery win at your age (if that). See a professional, please, because you're just going to "yeah, but..." everything said on here.
I just don't understand how I can go from ALS in my hand to mouth... The mouth is more scary because when you look anything up online all it says is bulbar ALS. I try strength tests and I always feel that one side of my tongue is weaker. I don't know how I could worry about ALS in my hand and it actually be starting in my mouth. Why can I be displaying symptoms in my mouth now though that I never did before.
Please Read This (http://www.nomorepanic.co.uk/showthread.php?t=196071) AGAIN! Especially the part about bulbar and ANXIETY!
Positive thoughts
MyNameIsTerry
13-06-17, 23:39
I just don't understand how I can go from ALS in my hand to mouth... The mouth is more scary because when you look anything up online all it says is bulbar ALS. I try strength tests and I always feel that one side of my tongue is weaker. I don't know how I could worry about ALS in my hand and it actually be starting in my mouth. Why can I be displaying symptoms in my mouth now though that I never did before.
But do you think you are best placed to perform tests on yourself? Are these tests normally only conducted by a trained person because they are the only ones who can make such a judgement?
Hey mpeckich,do you remember Stroud? The guy on AZ who thought he had ALS for two or three years and wouldn't listen to anyone who said otherwise?
Well, he never had it. He even got so far is to make an appointment with the Mayo Clinic because he pestered his docs so much looking for an alternate opinion.
All that stuff he thought he had about not being able to move or pick up his kid? It was all in his head.
Now that he realizes how horrible he was to poor people on some ALS forums who actually are having to deal with the disease, he feels so guilty. And how many people wasted their precious time on AZ trying to help him?
You're starting to sound like him, and it worries me.
I thought I had bulbar once . I keep getting choked on my own spit and water seemed to go up my nose when I swallowed and I felt like I was slurring certain words. Then my calf started twitching really bad and I fixated on that and forgot about all that other shit. Ignore it and go about your day , but time is really the only thing that helped me. I saw my Neuro multiple times and had an emg everything was fine I'd feel good for about a week and then I'd second guess him. Finally I realized if I had it I would definitely be very bad off. Go work out it will make you feel better and prove that you can gain muscle so no ALS.
MyNameIsTerry
14-06-17, 02:03
Have you ever read about the more severe Somatoform Disorder cases? I try not to mention details here as I worry they may be triggering for some. I can remember one neurologist writing an article, a plug to their upcoming book, about cases they have seen through their career which turned out to be psychosomatic and diagnosed by a psychiatrist.
These people are FAR more extreme than the things I've seen on here, including this thread. You wouldn't believe how these people were physically affected by an anxiety disorder which was very severe.
This neurologist performed tests which proved the people who experienced these very real physical disabilities didn't actually have the physical disability they thought they had. They simply didn't pass the tests but outwardly they showed a real disability, it needed tests to spot there was no real physical problem.
And to repeat, this was far worse than the tongue issues mentioned here. So, if they can experience that, can't you experience this through mental health issues?
Have you ever read about the more severe Somatoform Disorder cases? I try not to mention details here as I worry they may be triggering for some. I can remember one neurologist writing an article, a plug to their upcoming book, about cases they have seen through their career which turned out to be psychosomatic and diagnosed by a psychiatrist.
These people are FAR more extreme than the things I've seen on here, including this thread. You wouldn't believe how these people were physically affected by an anxiety disorder which was very severe.
This neurologist performed tests which proved the people who experienced these very real physical disabilities didn't actually have the physical disability they thought they had. They simply didn't pass the tests but outwardly they showed a real disability, it needed tests to spot there was no real physical problem.
And to repeat, this was far worse than the tongue issues mentioned here. So, if they can experience that, can't you experience this through mental health issues?
Can you hmu with link/name of book? sounds really interesting
MyNameIsTerry
14-06-17, 04:03
Can you hmu with link/name of book? sounds really interesting
It was a thread on another board linking to a newspaper. I'll have a look and PM it to you, that way it doesn't catch anyone out on this board.
Your doctors use a different manual so the names of the anxiety disorders might differ , as do criteria, but it's well explained under HA. It's not GAD or OCD based HA, it's more into the somatic disorders I think they might be called in the DSM-V (would have to check) e.g. Illness Anxiety Disorder that replaced Hypochondriasis.
I think it could be sonata form disorder at this point it originally started because I thought I had weakness in my right hand but my left muscle between my thumb and index finger was smaller. I focus on atrophy from January until March. I jumped off my bunk bed at school onto a concert floor and then my right foot started endlessly twiching... This lasted until the end of school in May. When I got home that summer the testing and worrying continued worse than in school. Until August when I went back to school I was worry free from August to November.. Then the worrying started with per curved weakness in my right foot where the twiching was earlier... Then immediately after the end of the first semester of my second year in December I thought I was bulbar because I kept thinking everything I drank went up my nose. Until March or February and then I thought I had speech abnormalities. I started sticking my tongue out to see if it was atrophied but I was worried. Then I noticed it isn't completely aligned with the two front teeth line that is in my mouth. And here we are today when I talk the tongue only touches the inside front right tooth of mine and I'm uncontrollable worry about my pronounciation.
---------- Post added at 01:02 ---------- Previous post was at 00:51 ----------
And for those from anxiety zone I remember shroud... I think that the difference with him and I, is that he saw many neurologists and I haven't seen a one. My doctor when my fear started just said squeeze my thumbs... And my mother just tells me I should be over this already.
And for those from anxiety zone I remember shroud... I think that the difference with him and I, is that he saw many neurologists and I haven't seen a one. My doctor when my fear started just said squeeze my thumbs... And my mother just tells me I should be over this already.
Somehow I don't think that seeing a neurologist will end your health anxiety either. By the way you're speaking, you seem to be deep in the anxiety fog. But by all means, if you want to see a neurologist, go for it. I just hope you take her/his diagnosis and recommendations to heart and don't question them as Stroud did for years.
MyNameIsTerry
14-06-17, 09:06
Well whichever form of anxiety it is, we need a doctor to make that diagnosis, I don't want to imply I'm diagnosing. OCD is another consideration. But I wanted to offer an alternative that is just an anxiety disorder which has also proven cases where the body has been impacted in ways that would seem impossible to us unless we read about them. I never knew it could get like that either until I read about such cases.
I find there is an element of "but anxiety surely can't do that" in some people's posts when they are talking about far less extreme things. I left it vague here but Vinny will tell you how much more extreme the cases I read are and he has ALS worries too.
I'm pleased to hear you are willing to accept there is an anxiety disorder of some kind involved here. That's really important because some have that initial acceptance battle to get beyond first.
Have you seen all the people on here who have had tests and within days they are battling the doubts all over again? I've certainly seen some who can get a test and then accept it and move on but I think they are a minority and/or those who have already made inroads in their recovery.
Do you think you will accept the outcome? If not, are you willing to accept a neurologist saying you don't have ALS means you really need help with your anxiety over this? Can you see how irrational this worry is if you read your thread and it had a different name on it than you?
Hi guys just thought i'd put my two cents in. I posted a few days back now about my ALS fear. I've also feared I have had a Chordoma, AIDS, Lukemia, Brain Tumour, Throat Cancer...
I've come to the realisation that everytime I experience something that is a little different in my body that i'm used to I normally google what I am experiencing, come across (insert serious disease here) read all of the other symptoms, then I suddenly am convinced that I have this certain disease and then I start perceiving symptoms in my head that aren't really there and I get myself worked up.
I once thought that I was talking a little longer to start urinating once. So I googled it. Prostate cancer. I looked at the other symptoms. Started experiencing the other symptoms straight away. Then I went to my GP, got a prostate exam, got given the all clear, didn't believe his judgement and then 2 days later I found myself in A&E GETTING AN EMERGENCY PROSTATE EXAM. All clear again.
Health Anxiety is horrible. The more you sit there constantly feeding into your fear the more you will start to convince yourself you really do have these symptoms and even though you THINK that you have the symptoms you don't. Notice how you say nobody will believe me that something is wrong with me? Because there isn't anything wrong with you.
If you have ALS (you don't), then there isn't much you can do anyway. So why spend the rest of your life worrying about it. Go outside and enjoy your life - with time this will all become a distant memory and you will realise how irrational you was being.
Hi guys just thought i'd put my two cents in. I posted a few days back now about my ALS fear. I've also feared I have had a Chordoma, AIDS, Lukemia, Brain Tumour, Throat Cancer...
I've come to the realisation that everytime I experience something that is a little different in my body that i'm used to I normally google what I am experiencing, come across (insert serious disease here) read all of the other symptoms, then I suddenly am convinced that I have this certain disease and then I start perceiving symptoms in my head that aren't really there and I get myself worked up.
I once thought that I was talking a little longer to start urinating once. So I googled it. Prostate cancer. I looked at the other symptoms. Started experiencing the other symptoms straight away. Then I went to my GP, got a prostate exam, got given the all clear, didn't believe his judgement and then 2 days later I found myself in A&E GETTING AN EMERGENCY PROSTATE EXAM. All clear again.
Health Anxiety is horrible. The more you sit there constantly feeding into your fear the more you will start to convince yourself you really do have these symptoms and even though you THINK that you have the symptoms you don't. Notice how you say nobody will believe me that something is wrong with me? Because there isn't anything wrong with you.
If you have ALS (you don't), then there isn't much you can do anyway. So why spend the rest of your life worrying about it. Go outside and enjoy your life - with time this will all become a distant memory and you will realise how irrational you was being.
Amen!
MyNameIsTerry
15-06-17, 01:41
Hi guys just thought i'd put my two cents in. I posted a few days back now about my ALS fear. I've also feared I have had a Chordoma, AIDS, Lukemia, Brain Tumour, Throat Cancer...
I've come to the realisation that everytime I experience something that is a little different in my body that i'm used to I normally google what I am experiencing, come across (insert serious disease here) read all of the other symptoms, then I suddenly am convinced that I have this certain disease and then I start perceiving symptoms in my head that aren't really there and I get myself worked up.
I once thought that I was talking a little longer to start urinating once. So I googled it. Prostate cancer. I looked at the other symptoms. Started experiencing the other symptoms straight away. Then I went to my GP, got a prostate exam, got given the all clear, didn't believe his judgement and then 2 days later I found myself in A&E GETTING AN EMERGENCY PROSTATE EXAM. All clear again.
Health Anxiety is horrible. The more you sit there constantly feeding into your fear the more you will start to convince yourself you really do have these symptoms and even though you THINK that you have the symptoms you don't. Notice how you say nobody will believe me that something is wrong with me? Because there isn't anything wrong with you.
If you have ALS (you don't), then there isn't much you can do anyway. So why spend the rest of your life worrying about it. Go outside and enjoy your life - with time this will all become a distant memory and you will realise how irrational you was being.
Doesn't it just reinforce how important it is to stop & think at that point where the subconscious sends all that "data" to the conscious mind and you react with "aaarrrggghhhhh"?
The cycles aren't much different whether it's panic attacks, intrusive thoughts, HA, etc.
The more your subconscious learns "it doesn't matter!" the more you get past it all.
Good luck to you. You've come to that first acceptance step here.
Doesn't it just reinforce how important it is to stop & think at that point where the subconscious sends all that "data" to the conscious mind and you react with "aaarrrggghhhhh"?
The cycles aren't much different whether it's panic attacks, intrusive thoughts, HA, etc.
The more your subconscious learns "it doesn't matter!" the more you get past it all.
Good luck to you. You've come to that first acceptance step here.
I am so back and forth on getting past it and then starting to feel like trash again :\ I have a history of panic attacks and intrusive thoughts, but its this new HA part that is turning out really bad for me in combination with the other two :x
Yesterday at dinner I was convinced I couldn't swallow properly. Tried eating one bite of a solid food this morning, felt like I couldn't do it. Slept all day and mom woke me up and made me eat and whaddya know, I could swallow.
I am still stuck on this perceived speech thing. I know it HAS to be perceived (or even if it is slightly real, its in my head) because whenever I am TRULY distracted (playing sports, talking to my doctor), it goes away.
It's just when I look in the mirror everyday I think my tongue is deviated that's the scariest thing to me. I posted a photo of it now..
Jackrabbit
15-06-17, 03:28
Looks like a pretty normal tongue to me....
MyNameIsTerry
15-06-17, 03:51
Looks like a pretty normal tongue to me....
Same here. If I took a photo of mine it would look like that (it might have the odd brownish lump on it though, just downed a choccy Danish thing :biggrin:)
Imagine of we took that pic and posted it on this thread. They would all look that this one but the OP would look back at their own and the subconscious would introduce doubt and off go the typical worrying thoughts of someone with HA.
NOTE: I'm not advocating we start taking pics of ourselves to establish what looks normal. That could easily get out of hand and nobody wants to see my moobs anyway :ohmy:
---------- Post added at 03:51 ---------- Previous post was at 03:44 ----------
I am so back and forth on getting past it and then starting to feel like trash again :\ I have a history of panic attacks and intrusive thoughts, but its this new HA part that is turning out really bad for me in combination with the other two :x
Yesterday at dinner I was convinced I couldn't swallow properly. Tried eating one bite of a solid food this morning, felt like I couldn't do it. Slept all day and mom woke me up and made me eat and whaddya know, I could swallow.
I am still stuck on this perceived speech thing. I know it HAS to be perceived (or even if it is slightly real, its in my head) because whenever I am TRULY distracted (playing sports, talking to my doctor), it goes away.
If It didn't fight you for it's own need to survive in your subconscious and it was easy to simply dismiss, it wouldn't be an anxiety disorder.
The subconscious learns these new fears and through the same process learns they aren't a valid process to then mothball them. But building fear is much quicker than dismantling it and that's how it supposed to be to quickly learn new legitimate threats to protect us from.
As a friend on here used to tell me & others, recovery is never a smooth curve so expect the blips. This gets easier but the more you work on it, the less the blips upset you. All that matters is progress. He should know, he went from a psychiatric ward to recovery.
You're saying my tongue doesn't look deviated? I think I'm just going to go to s neurologist and then get into therapy if he or she clears me..
I'm currently trying to wrap my head around how much of a demon HA is. The fact I can bounce from random different diseases and convince myself that I am experiencing different symptoms every couple of weeks is very strange.
mpeckich, how are you doing with your troubles speaking? This is the only thing that is still consistently bothering me, though it does seem to come and go.
I still feel like I'm having troubles speaking.
Me too. I also have TMJ. Do you clench your jaw or do anything else different with your mouth when you're stressed? My current theory is that it feels like I'm speaking wrong because a) I'm so fixated on it and I'm paying attention to my pronunciation like I never have before, and b) my jaw muscles are probably tight and tired from all the clenching I do. I've also read stories of people whose TMJ makes it difficult to enunciate (as opposed to slurring), which I think is both of our (perceived) problem
MyNameIsTerry
15-06-17, 05:13
Me too. I also have TMJ. Do you clench your jaw or do anything else different with your mouth when you're stressed? My current theory is that it feels like I'm speaking wrong because a) I'm so fixated on it and I'm paying attention to my pronunciation like I never have before, and b) my jaw muscles are probably tight and tired from all the clenching I do. I've also read stories of people whose TMJ makes it difficult to enunciate (as opposed to slurring), which I think is both of our (perceived) problem
Could that be part of the issue with swallowing?
I had about six months of Bruxism. I couldn't open my mouth fully as it felt tight and couldn't fully clamp my teeth together either. The muscles were enlarged.
Could that be part of the issue with swallowing?
I had about six months of Bruxism. I couldn't open my mouth fully as it felt tight and couldn't fully clamp my teeth together either. The muscles were enlarged.
I'm really not sure. I know that I have TMJ because my dentist told me, but I'm not totally sure what exactly its effects are or how it works. What I do know is that I know my jaw has been extremely tense. My TMJ joint doesn't seem to hurt itself, but my teeth hurt ridiculously bad. Some days I can't chew at all because I've clenched so hard the night before/earlier in the day. I can't seem to stop it, though.
Have any of you though been so paralyzed with fear to even go to a doctor with your symptoms. And I do believe I have TMJ for some time now I do know I grind my teeth at night have for forever
Why don't you get a mouth guard to wear at night?
BTW, teeth grinding is a very common anxiety/stress response, whether you have TMJ or not.
MyNameIsTerry
15-06-17, 05:40
I'm really not sure. I know that I have TMJ because my dentist told me, but I'm not totally sure what exactly its effects are or how it works. What I do know is that I know my jaw has been extremely tense. My TMJ joint doesn't seem to hurt itself, but my teeth hurt ridiculously bad. Some days I can't chew at all because I've clenched so hard the night before/earlier in the day. I can't seem to stop it, though.
It's not exactly easy to swallow if you tense your jaw muscles. The muscles in the neck tense too. I've just tried it!
So, it makes more sense it could be connected to that than something like ALS.
Muscle tension can have quite an impact on the body. I never had any of it before I went on my 2nd med after my relapse. I had months of headaches, stiffness, fatigue, etc.
I didn't have TMJ, it was just night grinding. With sone exercises my dentist gave me it calmed down. It finally went a little later after also taking some paracetamol before bed.
One of the coordinators at a self help group I used to go too had it. He said what sorted his was falling asleep with his little finger in his mouth.
Why don't you get a mouth guard to wear at night?
BTW, teeth grinding is a very common anxiety/stress response, whether you have TMJ or not.
I'm planning on trying one out soon. Hoping it works out because my teeth have been in some SERIOUS pain
---------- Post added at 04:46 ---------- Previous post was at 04:44 ----------
It's not exactly easy to swallow if you tense your jaw muscles. The muscles in the neck tense too. I've just tried it!
So, it makes more sense it could be connected to that than something like ALS.
Muscle tension can have quite an impact on the body. I never had any of it before I went on my 2nd med after my relapse. I had months of headaches, stiffness, fatigue, etc.
I didn't have TMJ, it was just night grinding. With sone exercises my dentist gave me it calmed down. It finally went a little later after also taking some paracetamol before bed.
One of the coordinators at a self help group I used to go too had it. He said what sorted his was falling asleep with his little finger in his mouth.
It is quite possible that my swallowing trouble was from that. Since that appears to already have subsided, I am less worried about it. I hope that is also the cause of my speech issues, whether perceived or not (seems to be perceived)
MyNameIsTerry
15-06-17, 06:45
Have any of you though been so paralyzed with fear to even go to a doctor with your symptoms. And I do believe I have TMJ for some time now I do know I grind my teeth at night have for forever
When I relapsed I knew exactly how hard starting an antidepressant could be because my first experience, when I had my breakdown, was hard for a few weeks. But what choice did I have? I reasoned I could sit & suffer everyday or push myself to see my GP who would try to help me.
I was shaking in the car all the way and sat in the waiting room struggling to breathe & wondering if I would be sick or lose control of my bowels.
I was sitting in the waiting room do tense I wasn't breathing very well for months after that. But going in anywhere was an issue for me due to feeling trapped.
I bet I'm one of many on here.
I'm not a HAer so I don't have to contend with the fears of tests finding things but I've seen others on this board more afraid to see a doctor than others who go to them more easily for reassurance.
---------- Post added at 06:45 ---------- Previous post was at 05:52 ----------
You're saying my tongue doesn't look deviated? I think I'm just going to go to s neurologist and then get into therapy if he or she clears me..
Only a professional can really say. The tongue being a flexible thing means we can change it's appearance naturally but whilst that may make you worry it's a very different thing to a medical professional trained to examine a tongue to check the nerves are working properly.
No I mean you've been so scared to go to the doctor because you believe that what you fear will come true. Like if I went to a neurologist and he or she said yeah you have ALS.
MyNameIsTerry
16-06-17, 01:28
No I mean you've been so scared to go to the doctor because you believe that what you fear will come true. Like if I went to a neurologist and he or she said yeah you have ALS.
I've seen members like that. Not all HAers are in the group who seek reassurance from doctors, some are terrified of tests proving things or just tests & doctors in general.
My slurred speech seems to becoming worse with more words. I'm sure I have ALS would it be worth it to go back to a PCP or the hospital first?
My slurred speech seems to becoming worse with more words. I'm sure I have ALS would it be worth it to go back to a PCP or the hospital first?
has your anxiety also gotten worse?
that seems like a really fast timeline for your speech to be getting noticeably worse :o
Go to your regular doctor and get checked out. I say this not because I think you have ALS, but because it's a good idea to get everything physical ruled out before you know its just anxiety. Make sure to get your thyroid checked too.
There is no point going to the ER. This is not an emergency. You aren't having chest pain, trouble breathing, bleeding or a high fever, right?
If everything checks out, and your doc says you just have anxiety (which is what I suspect will happen), then please talk med and therapy options with her/him.
http://www.alsforums.com/forum/do-i-have-als-als/38887-finally-asking.html
a lot of this post sounds quite similar to yours :whistles:
somebody on that forum that has a lot of experience with the disease even replied to your post and said you have HEALTH ANXIETY
you know you do too, because you are on a health anxiety forum!
somebody who has been affected by ALS wouldn't take very big risks with another person who they think might have it. if she thought there was any chance you had ALS, she'd tell you to go get checked out.
PLEASE READ THIS! (http://www.nomorepanic.co.uk/showthread.php?t=196071)
ALS is about failing, not feeling. Are people telling you that you sound drunk? No? You don't have ALS!
Positive thoughts
AntsyVee have you ever not gone to the doctor due to fear that they ok confirm your fears? That's why I'm scared, if I went to him he'd tell me you have something wrong or ALS. When my fears of bulbar first started I went to the hospital but couldn't get into a room from the ER because I left before then. I felt stupid and scared to hear what they had to say..
PLEASE READ THIS! (http://www.nomorepanic.co.uk/showthread.php?t=196071)
ALS is about failing, not feeling. Are people telling you that you sound drunk? No? You don't have ALS!
Positive thoughts
AntsyVee have you ever not gone to the doctor due to fear that they ok confirm your fears? That's why I'm scared, if I went to him he'd tell me you have something wrong or ALS. When my fears of bulbar first started I went to the hospital but couldn't get into a room from the ER because I left before then. I felt stupid and scared to hear what they had to say..
In his defense, since I'm in a similar place (but definitely getting better), I HAVE read stories of people who noticed their slurring before anyone else, but I don't think I've read any where ONLY they could tell when having other people pay full attention and listen for it.
And it is really hard to accept that what you perceive to be real (slurring speech) isn't according to everyone else. If he's like me, this is his first experience with that.
The thing is though, YOU ARE FINE! I promise.
A lot of times with bulbar patients, the slurred speech gets much worse with one or two drinks of alcohol. That is because since your tongue is already weak (hence causing you to slur), the muscle relaxing and coordination impairing effects of the alcohol is greatly amplified. It is often described as "one drink made me talk like I had 10".
When I get drunk, my problem magically goes away! And I'm talking 6-7 shots in, I sound better (to me) than I sound sober (I never slur my words when drunk). Why? Because when I'm drunk, I'm not thinking about it. I'm not fixated on my speech.
And for those from anxiety zone I remember shroud... I think that the difference with him and I, is that he saw many neurologists and I haven't seen a one. My doctor when my fear started just said squeeze my thumbs... And my mother just tells me I should be over this already.
No you're not Stroud. I agree with Antsy that your anxiety pattern and style are similar but Stroud is a legend ;) I also agree that you don't want to become him.
It's been a while since AZ but there were a few members that really were in the ALS rabbit hole. You're really dug in deep here. We're taking snuggling with the babies 3 feet under!
One of the patterns that Stroud (and other deep in whatever rabbit hole they're in) display is totally ignoring any statement or post that will negate their belief of the illness that "know" they have. You've done that to my posts. For someone wo has "So much to say", you've not said a word about my posts. That link shows facts about ALS that actual sufferers experienced. Several members here have posted on that site. It's disrespectful to do so when every fact discounts the possibility.
So... While I think you really should invest your money on a mental health professional, Go ahead and pay to see a neurologist or any other specialist you feel you need to see. I'll have a "Told ya so" all ready. Forgive me for being blunt here. You're much too young to be held captive by a mental illness. I have a daughter a little older than you. She's a sufferer. I, along with her mother, made sure she got help. She worked hard and got better, graduated college and just started working in her field (early childhood development/educator) and doing great. But when I see someone so young being dragged down by something that can be fixed it brings out the Dad in me.... And yeah... it's Father's Day... go figure!
Positive thoughts
AntsyVee have you ever not gone to the doctor due to fear that they ok confirm your fears? That's why I'm scared, if I went to him he'd tell me you have something wrong or ALS. When my fears of bulbar first started I went to the hospital but couldn't get into a room from the ER because I left before then. I felt stupid and scared to hear what they had to say..
Everyone is afraid to go to a doc or dentist or vet and hear bad news...but we go anyway because common sense tells us that preventative care will help us avoid the bad diagnoses we fear. It's not 100% guaranteed, but nothing in life is.
One of the patterns that Stroud (and other deep in whatever rabbit hole they're in) display is totally ignoring any statement or post that will negate their belief of the illness that "know" they have. You've done that to my posts. For someone wo has "So much to say", you've not said a word about my posts. That link shows facts about ALS that actual sufferers experienced. Several members here have posted on that site. It's disrespectful to do so when every fact discounts the possibility.
That's what I call, "deep in the anxiety fog." Those are the people who come on here looking for advice, but either ignore or argue with those who do not affirm their opinions.
In his defense, since I'm in a similar place (but definitely getting better), I HAVE read stories of people who noticed their slurring before anyone else, but I don't think I've read any where ONLY they could tell when having other people pay full attention and listen for it.
That's part of the problem... "I HAVE read". You can find something to back up your irrationality if you Google enough. Look, I've been around enough to know and understand how anxiety can and does skew perception but when it skews common sense and good judgement, that's another story. The OP not only has a post on the ALS forum (it reads almost verbatim) but apparently opened multiple IDs which were all closed and banned. Yes, this is a pet peeve of mine. I experienced it on the cancer boards I was part of. In fact, it was several posters that led me here.
Get help with the real illness you do have and leave the people who are actually suffering from the physical illnesses you fear alone! :lac:
Positive thoughts
This kid has been banned from the ALS forum. That's really pathetic, dude. These people are dying. If you had Bulbar for 7 months, EVERYONE WOULD KNOW. Jesus Christ, man, get a grip. You're approaching Stroud status.
This kid has been banned from the ALS forum. That's really pathetic, dude. These people are dying. If you had Bulbar for 7 months, EVERYONE WOULD KNOW. Jesus Christ, man, get a grip. You're approaching Stroud status.
Agreed.
Health Anxiety is a very selfish form of OCD/anxiety. If you truly feel for those people, mpeckich, don't make them feel worse with your speculation.
I don't want to be around stroud and I don't want to bother the poor suffers on the ALS forums. I'm going to my PCP tomorrow and seeing if he'll refer me to a neurologist. If everything comes back normal I'll go back to help for my anxiety so that if my worries arise after I'll be able to cope with the thoughts and fears.
I don't want to be around stroud and I don't want to bother the poor suffers on the ALS forums. I'm going to my PCP tomorrow and seeing if he'll refer me to a neurologist. If everything comes back normal I'll go back to help for my anxiety so that if my worries arise after I'll be able to cope with the thoughts and fears.
Yay! :yesyes:
Got into my PCP today and he referred me to a neurologist. I think this is a good step to rule everything out but on his sheet he put diagnosis on dysarthria; I don't know if it's to get me a referral or because he thinks I actually have it... Idk when my neurology appointment is but hopefully I'll be able to find some peace soon. Thank you all for your patience listening and I'll update when I go for my neurology appointment. For those who have seen a neurologist are there anythings I can do to help them with the appointment?
nervousnelly52
20-06-17, 00:36
Got into my PCP today and he referred me to a neurologist. I think this is a good step to rule everything out but on his sheet he put diagnosis on dysarthria; I don't know if it's to get me a referral or because he thinks I actually have it... Idk when my neurology appointment is but hopefully I'll be able to find some peace soon. Thank you all for your patience listening and I'll update when I go for my neurology appointment. For those who have seen a neurologist are there anythings I can do to help them with the appointment?
They will do a neurological exam of you, probably a much more extended version of what your PCP did
They will probably order an MRI of your spine and head
There isn't really much you can do other than think about what you want to ask them and make sure you have addressed all of your concerns! Considering you have health anxiety that seems doubly important to me.
My PCP didn't do an exam today just referred me, will they do an EMG or will I have to ask about getting one?
sarahsparkleshine
20-06-17, 04:36
You do NOT have ALS. Omg, you'd be unable to get up, or put your pants on. You definitely wouldn't be able to type this much, and you wouldn't be wondering anything. You'd know.
Keep us updated.
In the meantime, keep yourself distracted. Do hobbies and other things you enjoy. There's no point worrying yourself to death speculating. You've done all you can for now.
On so an update I got my consult appointment on the 27th of July and I'm more anxious now to even go than I was before. I also have an appointment August 30th but I don't know what it is for maybe an MRI. Either was my speech is rapidly deteriorating and I always have to repeat things or an constantly mispronouncing things.
Again, there's no point in speculating and dwelling on it. You've done all you can whether it is real or perceived. Keep yourself busy.
So it's less than a month until my appointment, my speech is still deteriorating and I'm getting more and more nervous about my appointment. I know I'm gonna get diagnosed with ALS
Let us know how you make out
Positive thoughts
So it's less than a month until my appointment, my speech is still deteriorating and I'm getting more and more nervous about my appointment. I know I'm gonna get diagnosed with ALS
You wanna make a bet? I'll give you my PayPal and everything. If you have ALS, I'll send you 5,000 dollars. If you don't have it, you're never allowed to post about ALS again. Cool?
You wanna make a bet? I'll give you my PayPal and everything. If you have ALS, I'll send you 5,000 dollars. If you don't have it, you're never allowed to post about ALS again. Cool?
I mean sure, I know you're completely convinced that I don't have it but my symptoms are real. I shudder my words and cannot pronounce certain sound groups fluently in rapid speech or different situations. You think I should get it moved up? Like a cancellation list.
Well, you'd be the first person on here who thought they had ALS who'd actually had gotten in.
I mean sure, I know you're completely convinced that I don't have it but my symptoms are real. I shudder my words and cannot pronounce certain sound groups fluently in rapid speech or different situations. You think I should get it moved up? Like a cancellation list.
I think someone betting you £5,000 you don't have something is a pretty clear indicator they don't think you should get it moved up on a cancellation list... you're at that part in your HA where you're not even clearly reading things that don't fit your viewpoint.
I hope you get the all clear soon and can put this behind you, but sadly the reassurance will be short-lived and professional mental health help is what's needed to fully put this to bed.
paranoid-viking
03-07-17, 23:10
:welcome:
I don't know much about ALS, but I've never seen any person on AZ or this site who've thought they've had it and they actually did. So statistically, I don't think it's anywhere near likely that you have it.
ALS is what Stephen Hawkins has yes?
I mean sure, I know you're completely convinced that I don't have it but my symptoms are real. I shudder my words and cannot pronounce certain sound groups fluently in rapid speech or different situations. You think I should get it moved up? Like a cancellation list.
There are things that I can't say "in rapid speech" too.
So far, though, everything I've had trouble saying everybody else I've had try to say it conveniently also had trouble saying it!
Try saying this quickly a few times:
"defended in an intellectual debate"
I was reading an article out loud and completely got stuck on this.
almost everybody else I've had try to read it got stripped up too, and pauses between the "in" and "an" to get it out clearly.
Can somebody else try this and tell us their results so he sees that some things are just hard to say?
Try saying this quickly a few times:
"defended in an intellectual debate"
Can somebody else try this and tell us their results so he sees that some things are just hard to say?
Then try these (http://www.uebersetzung.at/twister/en.htm) and let us know how you do.
Positive thoughts
MyNameIsTerry
04-07-17, 01:32
There are things that I can't say "in rapid speech" too.
So far, though, everything I've had trouble saying everybody else I've had try to say it conveniently also had trouble saying it!
Try saying this quickly a few times:
"defended in an intellectual debate"
I was reading an article out loud and completely got stuck on this.
almost everybody else I've had try to read it got stripped up too, and pauses between the "in" and "an" to get it out clearly.
Can somebody else try this and tell us their results so he sees that some things are just hard to say?
All human beings do things like that.
When I used to go to the anxiety groups we used to read out modules between us. Guess how many of us got stuck pronouncing words?
Remember, Serotonin and cognitive functioning. Try thinking clearly with brain fog or concentrating on something having a panic attack.
This is why you have to be careful comparing any symptoms from anxiety because they often overlap into many other things including cancers, ALS, etc.
---------- Post added at 01:32 ---------- Previous post was at 01:29 ----------
Well, you'd be the first person on here who thought they had ALS who'd actually had gotten in.
Yep.
The ALS forums will be sufferers actually with ALS. Now, there must be a reason why they all ended up on there and never via anxiety forums? The same with cancer forums. I've known people on here with cancer yet they weren't worrying about it in their anxiety, it came out of the blue for them.
Damn it, people, Bulbar ALS is not about having "trouble" saying words fast, it's about sounding hammered drunk. Seriously, you will sound like a drunken deaf person. Also, the chances of someone getting Bulbar under 60 is very low and under 25 I've never even HEARD of. I challenge anyone to find 5 stories of Bulbar before 25 anywhere in the annals of medical literature.
Damn it, people, Bulbar ALS is not about having "trouble" saying words fast, it's about sounding hammered drunk. Seriously, you will sound like a drunken deaf person. Also, the chances of someone getting Bulbar under 60 is very low and under 25 I've never even HEARD of. I challenge anyone to find 5 stories of Bulbar before 25 anywhere in the annals of medical literature.
Not to worry others on the board but I found one of a 20 year old on an ALS website and a news article of a 24 year old.
I'm have trouble pronouncing salvaged steel, and changed and charged.
---------- Post added at 21:19 ---------- Previous post was at 21:17 ----------
As well as any sts ending words like costs, resists, posts. Another think is I can't hear the first is in words that end with s leading into another s word ex: girlfriends sister.. It sounds like one huge s. I can't pronounce mouths either!
MyNameIsTerry
04-07-17, 02:40
Not to worry others on the board but I found one of a 20 year old on an ALS website and a news article of a 24 year old.
I'm have trouble pronouncing salvaged steel, and changed and charged.
---------- Post added at 21:19 ---------- Previous post was at 21:17 ----------
As well as any sts ending words like costs, resists, posts. Another think is I can't hear the first is in words that end with s leading into another s word ex: girlfriends sister.. It sounds like one huge s. I can't pronounce mouths either!
You might have found Scotland's youngest MND sufferer there. She was 19 at the time but was covered in the national press at 20 in 2014.
If you did, you might want to read what an inspirational young woman she is and how she is fighting it all the way.
It's extremely rare in teenagers.
Mpeckich, what does your family think now that you suddenly have the inability to speak properly?
My mother said I sound fine, she won't even go to the neuro with me on the 27th. They all say it's anxiety but it feels very real! Everytime I drink too I feel liquids going up my nose and it really scares me as well!
I have done a ridiculous amount of research on this topic, and with NO FAMILY HISTORY I believe there have been about 10 recorded cases of sporadic juvenile bulbar onset als.
It's really easy for anyone to say after they've been to a neuro I'm so scared though I'm gonna go there and fail a clinical or get an EMG that's dirty..
MyNameIsTerry
04-07-17, 04:42
It's really easy for anyone to say after they've been to a neuro I'm so scared though I'm gonna go there and fail a clinical or get an EMG that's dirty..
Maybe in the mind of a HA sufferer but for most people they won't even be thinking any of this to even pursue a neuro referral.
When the person perceiving all these physical issues, which would be quite apparant to another person, is being told they can't see anything, it's obvious that anxiety is the issue to resolve.
My mother said I sound fine, she won't even go to the neuro with me on the 27th. They all say it's anxiety but it feels very real! Everytime I drink too I feel liquids going up my nose and it really scares me as well!
I know there is no point in speculating, as the neuro will set you straight, but if your own mom doesn't think there's anything wrong with you, and can't hear any problems in your speech, then you probably don't have any. We both know if you had ALS worthy speech problems, everyone you talked to would be able to notice.
I've never been to a neuro, nor have lots of BFS'ers, which is what you are.
Kid, you are gonna get LAUGHED out of that neurologists office. Be prepared for that. Be prepared to eat humble pie and then use this as a learning experience to vigorously tackle your anxiety.
I honestly hope I'm laughed at josh, I don't want to be right I'm so scared I have this disease though that's why I'm extremely worried! If I knew I didn't have it I would've never been on anxiety zone or here on no panic!
The neurologist is probably going to look at you like mine looked at me lol. Not being able to pronounce certain words isn't bulbar. Your brain can't make one's motor nerves work so everything one says is horribly slurred. One wouldn't be able to swallow anything or use one's tongue at all. It's a terrifing disease but you have no REAL symptoms of it. Get off this site and enjoy the summer. I had this fear and then something ender else twitched and I forgot all about bulbar. If you were having speech problems others would notice 1st not u.
Any other of you guys find yourselves stumbling over your words a lot when anxious or just thinking about it too much?
I've been feeling a ton better abouy my issues. I used justanswer.com and sent two videos of my tongue movement to two neurologists who said it is perfectly normal movement, slightly exxagerated due to anxiety.
It has looked that way for a month, and the very next day after they told me it was normal, it didnt move NEARLY as much in any position. Made me feel a ton better.
I still am pretty fixated on my speech though, and certainly stumble on my words and have everything just come out jumbled when I'm thinking about it too hard (this is pretty normal though, eh?)
It feels when I speak every work that is ending in a -D, -t, -th is blending with a word that starts with the same sound. For example she walked the dog, I can't hear when I saw it the -t sound for the past tense! Same with s sounds like brads shifts, to me it sounds like brad shifts. This is my worry
I have this too, but can anyone else confirm that this is just how talking works? I always ask people to repeat sentences
Like the post I made on this thread earlier mpeckich,
say the sentence "defended in an intellectual debate"
can ANY of you guys on this forum say that without either a) jumbling it up or b) pausing after "defended" very briefly to reset
---------- Post added at 04:46 ---------- Previous post was at 04:43 ----------
I think your problem is the same as mine. You are paying too much attention to the way you talk. I can pretty much guarantee youve always spoke that way.
Go on youtube and search "ALS speech"
it has a VERY distinct sound.
In the earliest stages, people do compare it to sounding drunk, but from most of what I've read it does have a pretty unique sound to it. Listen to the way they talk. Then record yourself on your phone and listen to how you sound.
That should at least be a little bit comforting.
MyNameIsTerry
05-07-17, 06:10
I honestly hope I'm laughed at josh, I don't want to be right I'm so scared I have this disease though that's why I'm extremely worried! If I knew I didn't have it I would've never been on anxiety zone or here on no panic!
That's going to be your first battle, accepting your have an anxiety disorder. People who have health scares tend not to join these anxiety forums. Where are they all? They're not on NMP.
If you thought you had ALS, why would you join an anxiety forum? There's a clue there that you know there is an anxiety problem.
Someone with an anxiety disorder reacts as you are.
---------- Post added at 06:10 ---------- Previous post was at 06:03 ----------
Any other of you guys find yourselves stumbling over your words a lot when anxious or just thinking about it too much?
I've been feeling a ton better abouy my issues. I used justanswer.com and sent two videos of my tongue movement to two neurologists who said it is perfectly normal movement, slightly exxagerated due to anxiety.
It has looked that way for a month, and the very next day after they told me it was normal, it didnt move NEARLY as much in any position. Made me feel a ton better.
I still am pretty fixated on my speech though, and certainly stumble on my words and have everything just come out jumbled when I'm thinking about it too hard (this is pretty normal though, eh?)
Put it another way. If you start forgetting things you did today or walked into a room for something but forgot it, would you think you had early onset dementia? Some of here do.
But I bet many on here have had issues just like that from their anxiety. I've had many.
You have to think about how mental health disorders affect the brain just as we learn to understand how anxiety impacts us in tons of ways physically. Some of the brain transmitters involved that are impacted play roles in cognition, memory, etc.
Ditto what Terry said
mpeckich google "aboutbfs slurring speech" or even "nomorepanic slurring speech"
Being convinced you aren't talking properly certainly isn't the most common anxiety symptom, but anxiety usually affects people in ways that are relevant to their worries (health anxiety I mean, not sure if true for regular anxiety)
Fear of bulbar onset als isn't common. Fear of any disease that affects speech isn't common. Fears of things like cancer, that are pretty common, are.
Among people that DO fear ALS at our early age, thinking you are slurring speech is VERY COMMON because we are so fixated on it, and we haven't ever been in our lives.
20 days until my appointment and things are getting worse and worse, I'm finding it harder to pronounce more words.. I can barely pronounce any -Ed ending leading into a -D -t -th sound now. And everytime I drink I swear liquids are going into my nose it's been this way since January with the liquids, but my speech is rapidly deteriorating.
Again, if the people around you do not notice anything different in your speech, it's not deteriorating, it's all your perception.
I keep asking my mother and she says everything is alright, but I keep thinking she says that because she wants be to stop bothering her. Everytime I drink anything I feel like my nose runs afterwards though and there's liquids going up my nose.
nervousnelly52
08-07-17, 01:29
I keep asking my mother and she says everything is alright, but I keep thinking she says that because she wants be to stop bothering her. Everytime I drink anything I feel like my nose runs afterwards though and there's liquids going up my nose.
A runny nose after eating is normal for some people. I get that often. Is that what you're talking about?
... and did you read one of the many websites out there talking about cranial nerve malfunction that mentioned water getting into the nose after swallowing?
MyNameIsTerry
08-07-17, 01:52
I keep asking my mother and she says everything is alright, but I keep thinking she says that because she wants be to stop bothering her.
Do you think for the sake of a quiet life she would willing ignore symptoms her child was ill?
Don't you think she would be pursuing help for you?
Please Read This (http://www.nomorepanic.co.uk/showthread.php?t=196071) AGAIN! Especially the part about bulbar and ANXIETY!
Positive thoughts
Do you think for the sake of a quiet life she would willing ignore symptoms her child was ill?
Don't you think she would be pursuing help for you?
Yeah I think she would but she believes that it's all in my head and said I can go to a neuro but I'm gonna have to do it myself. I don't think she thinks there's something wrong because I worried so long.
---------- Post added at 22:25 ---------- Previous post was at 22:23 ----------
A runny nose after eating is normal for some people. I get that often. Is that what you're talking about?
... and did you read one of the many websites out there talking about cranial nerve malfunction that mentioned water getting into the nose after swallowing?
Yeah I read about cranial nerve palsy after soda I was drinking kept feeling like it was going up my nose, I figured it was the fizz and all. I have a deviated septum so my nose is always clogged anyways so idk if it's running from that I have bad allergies to dust and pollen as well.
nervousnelly52
08-07-17, 03:35
Yeah I read about cranial nerve palsy after soda I was drinking kept feeling like it was going up my nose, I figured it was the fizz and all. I have a deviated septum so my nose is always clogged anyways so idk if it's running from that I have bad allergies to dust and pollen as well.
It's always possible something actually is wrong, and I can't speak to your experience, but I will tell you this in hopes that it will help you- whenever I read about a symptom, all of a sudden, I start looking for it, and all of a sudden, I start getting it or noticing it. I never had problems with tingling in my body until I read that it was a side effect of one of the drugs I'd been taking- but a very rare one. Ever since then, I've gotten it all the time.
I don't think she thinks there's something wrong because I worried so long.
And therein lies the real answer. In the time you've been worrying about this (I recall your posts on AZ so t's been at least a year), there would be no doubt something was wrong. While you're not approaching Stroud status in your posting/threads, I believe you're equally as ill with your anxiety about ALS.
I also believe the monies you're going to have to spend to see a neurologist and testing would be better spent on a mental health professional. Perhaps if you approached your mother and asked her to take you to a therapist, she would be open to doing so and help monetarily as well.
More than anything, it's just terribly sad to know you're suffering needlessly and the wounds are self inflicted.
Good luck... I truly hope you find peace...
Positive thoughts... I'm out...
After you get a FIRM no ALS from the neuro, I hope you come back and face the music here. I'll never forget the woman on anxiety zone (momof2 or something) that worked the board into an absolute frenzy convincing us she had ALS, and then after her neuro appt, she wouldn't post again. Even though she checked her thread daily, she wouldn't respond to anyone. Come back for your lashings :)
After you get a FIRM no ALS from the neuro, I hope you come back and face the music here. I'll never forget the woman on anxiety zone (momof2 or something) that worked the board into an absolute frenzy convincing us she had ALS, and then after her neuro appt, she wouldn't post again. Even though she checked her thread daily, she wouldn't respond to anyone. Come back for your lashings :)
The best was that chick that thought she had rabies...EVEN AFTER she conned some doctor into giving her the rabies shots! :scared15:
Well josh if I come back and I have a clean clinical and EMG and don't have ALS you can lash me all you want! I'm just so scared I have it man..
MyNameIsTerry
09-07-17, 06:40
Well josh when I come back and I have a clean clinical and EMG and don't have ALS you can lash me all you want! I'm just so scared I have it man..
Fixed that. :yesyes:
After this neuro appointment if you are told you have no signs of ALS, will you tell you mum this and talk to her about getting therapy for your worries?
tryingtosurvive1
09-07-17, 07:05
while you're waiting can you go exercise? I did yoga today and it made me feel better about everything.
Yoga is a great anti-anxiety tool! Not to mention all it's other benefits...
tryingtosurvive1
09-07-17, 07:16
I have a milder neuromuscular condition (CMT) that's affected my feet in the last year and of course terrified me. But I can still do most everything (well, in shoes). It was a confidence-builder. For the rest of you who probably have nothing or biomechanical issues exercise should be even more reassuring.
Well I called today and they didn't have anything open earlier, so I'm locked in at the 27th of July... Idk if I can make it until then I feel so scared... I have officially isolated my problem though and I don't know if it's like this with all English speech. Ed endings in front of a T word like "erased the" I can't always hear the Ed when I say it. Idk if that's normal. I have been watching linguistics videos online which seem to say not hearing the Ed is normal but I'm still so scared.
Stop fixating on this. No one should be watching linguistics videos unless they're majoring in it. Go for a walk. Clean something. Watch a movie. Or read some self help books. I recommend "Brain Lock" by Schwartz.
TattooArtist
10-07-17, 21:10
Man oh man when you end up actually having a health issue...
Well I called today and they didn't have anything open earlier, so I'm locked in at the 27th of July... Idk if I can make it until then I feel so scared... I have officially isolated my problem though and I don't know if it's like this with all English speech. Ed endings in front of a T word like "erased the" I can't always hear the Ed when I say it. Idk if that's normal. I have been watching linguistics videos online which seem to say not hearing the Ed is normal but I'm still so scared.
How many times can you be told that this is not how ALS presents? ALS is a rapidly progressive illness that utterly destroys your basic functioning. As you've been told on this thread, speech problems associated with this illness make you sound like you're completely drunk. You can't pronounce certain words perfectly, in what way is that even remotely the same?
I'm sorry to disappoint you, but a neurologist won't even get as far as giving you the test you so desire. You'll get a basic neurological examination, testing strength, reflexes and reactions, you'll be told you have full function and be sent on your way. You're wasting your money and your time, frankly.
How many times can you be told that this is not how ALS presents? ALS is a rapidly progressive illness that utterly destroys your basic functioning. As you've been told on this thread, speech problems associated with this illness make you sound like you're completely drunk. You can't pronounce certain words perfectly, in what way is that even remotely the same?
I'm sorry to disappoint you, but a neurologist won't even get as far as giving you the test you so desire. You'll get a basic neurological examination, testing strength, reflexes and reactions, you'll be told you have full function and be sent on your way. You're wasting your money and your time, frankly.
I hope so I'm just worried that the symptoms with remain after the appointment and I'll feel that they missed something and this will feed my anxiety even more. I feel helpless completely helpless.
Dude. Brain Lock. Read it.
MyNameIsTerry
11-07-17, 01:19
Well I called today and they didn't have anything open earlier, so I'm locked in at the 27th of July... Idk if I can make it until then I feel so scared... I have officially isolated my problem though and I don't know if it's like this with all English speech. Ed endings in front of a T word like "erased the" I can't always hear the Ed when I say it. Idk if that's normal. I have been watching linguistics videos online which seem to say not hearing the Ed is normal but I'm still so scared.
Right, so you have isolated the problem? And it's about use of English speech where "ed" is followed by "the".
So, when I say "erased the" do you know I actually say "erase-te the"?
I've been doing it for many years because it's part of local dialect for many. Ever heard of "Geordies"? I'm not one but their accent is heavy and they pronounce things very different to the rest of us. The same can be said for many dialects and surely it's the same in the US? I know we Brits tend to notice differences in how you guys pronounce things. Do NYers sound like Texans?
It's so normal that people complain about mispronouncation being a modern problem with younger generations. That's bull since local dialects have always been around but some it's just changing as we become more multicultural.
Why do you think we have things like acting schools? They don't just train them to act, they train them to speak. The same with singing.
I agree with Gary. Seeing a neurlogist for this is just throwig money at the medical profession and whilst HAers might want it to reassure & rule out, what is there to rule out? With the NHS I doubt you would get past a GP for any of this and for good reason. Each test is only entertaining your anxiety and pushing back that day when you will have to face it and start the hard journey of change.
As said earlier, better money would be spent on therapy. And your mum is doing absolutely the right thing, she is unwilling to entertain your anxiety to reassure it. It's just a shame that private doctors will take anyone's money for a quick exam (much of which a GP can probably do) to tell you it's nothing. But with this being the US, and private in general, I expect the words "there is nothing wrong and you don't need X test" will be followed by "but you can...for reassurance if you want to" which is waiving a big red flag to most HAers and out come their wallets.
I hope so I'm just worried that the symptoms with remain after the appointment and I'll feel that they missed something and this will feed my anxiety even more. I feel helpless completely helpless.
The symptoms will remain, because you're going to the wrong type of doctor. You're going to a doctor that specialises in diseases of the nervous system and spinal chord, the doctor you need specialises in diseases of the mind.
I don't even think anything you've listed could even be considered a "symptom" of anything, they're nothing more than repeatative obsessions that you'll inevitably find fault in because you're paying such close attention to them.
Just a little update I know you'll be glad to hear but I made an appointment with my old anxiety specialist for August 7th. So I'll be going to the neuro July 27th and then the anxiety specialist on the 7th, very nervous and scared, but I think I can do this. I still feel like there is something wrong with my speech but I'm trying to overcome it
Yeah, I think you also know, deep down, that this is just anxiety.
I love that this thread is still going on because I am in such a similar spot.
Don't want to make another thread for me so I'll post here so mpeckich can know how I'm doing too since we have almost the same problem.
I was on zoloft from my PCP, took it for about 3 weeks. I stopped taking it a week ago ish because the side effects were awful for me. I'd rather just deal with the anxiety.
In case you were curious - my insomnia was worsened by a LOT. where I usually take 2-3 hours to fall asleep, it was taking 4-5. I also was waking up constantly. Headaches all day every day. Episodes of vertigo. All started 2-3 days after starting zoloft, ended 2 days after stopping it.
I have been feeling a lot better about my speech. For whatever reason, instead of being constantly stressed and feeling bad about it now, I'll be perfectly okay with it for most of the day and be accepting that is anxiety, and then I'll start focusing on it super hard for a short period of time and just be horribly horribly upset. I've even cried a few times over it.
I hadn't brought this speaking problem up to my psychologist until over a month after it started (I swore I did..guess not). He guaranteed me it was my anxiety and OCD. He said..probably what everyone is telling you (I know its what everyones been telling me) - that I am paying too much attention to it. He got me extremely relaxed, and then started having me focus on other things. Parts of my body, sounds from the room (an air vent for instance), etc. They all seemed totally weird when I was focusing on it. He assured me that because I fear (bulbar) ALS so much I am constantly focused on it, so it is always seeming wrong.
Just like you, my problem seems to be with the ED's and S's. The more time passes, though, I realize I have been overcompensating a lot. Because I am so aware of my talking, I am talking differently than I normally do.
For example, the phrase "other than" is hard for me to say.
I realized that I normally say it as "other 'n"
Saying "other than" is hard for me...because I've never said it that way.
The state I'm from, Michigan, is KNOWN for taking the least amount of effort possible to talk. A "michigan accent" is pretty much being lazy with all of your words. Since I am thinking about how I talk, I'm trying to talk "properly"...and it is hard for me to get a lot of those syllable combinations out.
Overall, I've been feeling a lot better..and I think you too.
My process to feeling better so far has been like this.
Age? We would be one of <30 cases of bulbar onset SALS ever recorded around our age group.
UMN and LMN is part of ALS. Test your reflexes. You can self test them. Normal jaw jerk? No UMN signs. Presenting with JUST LMN damage would make it even more rare.
And best of all...find a case EVER of someone with bulbar als who "swore that they couldn't talk right but everyone else thought they talked normal"
I don't think thats ever happened.
I can confidently say, mpeckich, that if we have ALS, we'll be the first people to EVER present this way.
Iron that into your head. The first EVER.
At this point, it is like us worrying about developing some new brain disease that nobody's ever had that makes you mentally retarded and then you spontaneously combust 3 weeks into it.
IT HAS NEVER HAPPENED.
Since ALS is progressive, both of us will start to feel better with time. I am feeling better. You are feeling better. This trend will continue.
Best of luck at your neuro appointment. I can pretty much guarantee you it'll go just like this:
test reflexes: all normal, maybe a bit brisk on knees and stuff due to anxiety, but nothing crazy. don't worry if that is the case
tongue strength and agility tests: will be perfectly normal (my tongue has actually gotten faster in the last month that I've been looking at it every day in the mirror..by quite a bit...wouldn't happen if i had a disease that made it progressively weaken!)
check for tongue fascics: won't be there
Hi all I have now 10 days until my appointment with the neuro, but when I woke up with me trying to hack up phlegm and everytime I do it now it feels like my soft palate is closing on my tongue and I can feel it right on my tongue idk if this is soft palate weakness.
You have phlegm in your throat...that's what it feels like when it's all gooey in there.
MyNameIsTerry
17-07-17, 05:39
Tight throats and anxiety can definately go together.
Hey dude,
I have also had an ALS scare before. I was completely convinced I had it and was around your age (so around three years ago for me).
I was mispronouncing words constantly, always asking my girlfriend if it sounded like I was slurring. She would tell me I sound completely normal, I of course would never believe her. I even started clearing my throat like 30 times a day convinced there was something going on there, this led to me kind of occasionally choking on my own saliva from time to time. Which obviously in turn exacerbated my anxious ALS thoughts.
My foot started "dragging" from time to time and I would swear I was tripping over more.
I would drop things like cups occasionally and each time I did I essentially had a panic attack.
All of the above where completely self fulfilling prophecies, however the craziest symptom I had was muscle twitching. I would sit there and watch my legs and arms twitch like there were worms underneath the skin. Sometimes it would occur when I wasn't focusing on anxious thoughts, I could watch it beneath my clothes.
Three years later, I'm still here. Since then I have convinced myself I have a plethora of insidious diseases from ALS to HIV, HIV to brain cancer and lately colon cancer (for the second time). Don't let this mental illness rule your life.
My ALS scare came during the second year of my masters degree and all I can say is I am glad it occurred during a semester break.
I'm no doctor however I can tell you that you don't have ALS. You do however have a vicious cyclical mental health disorder that can steal as much of your life from you as many serious diseases.
So Kaelon, what did you do to help get yourself out of the clutches of HA? Maybe it could help mpeckich.
I'm having the complete failure of all my bulbar muscles I don't understand how I can't not have it I guess I'll find out in 10 days though officially.
I am unfortunately still well within the clutches. I am just now focused on a different disease and convinced I once again have colon cancer. However, last week I did start seeing a therapist.
I'm having the complete failure of all my bulbar muscles I don't understand how I can't not have it I guess I'll find out in 10 days though officially.
Dude, if you had a complete failure, wouldn't you be in-able to swallow? C'mon now.
---------- Post added at 23:47 ---------- Previous post was at 23:46 ----------
I am unfortunately still well within the clutches. I am just now focused on a different disease and convinced I once again have colon cancer. However, last week I did start seeing a therapist.
I'm sorry to hear that. I hope you find some relief with therapy. I know it's certainly helped me with my PTSD.
I'm having the complete failure of all my bulbar muscles I don't understand how I can't not have it I guess I'll find out in 10 days though officially.
So you can't talk at all or swallow? Is that what you're saying? Because that's what "complete failure" means. Or, are you just telling yourself that you have "complete failure" to make this more convincing?
No I woke up yesterday unable to swallow normally or hack up phloem because it I kept hitting my soft palate..
And did you eat yesterday?
I'm having the complete failure of all my bulbar muscles I don't understand how I can't not have it I guess I'll find out in 10 days though officially.
You missed *self diagnosed there
MyNameIsTerry
18-07-17, 06:11
In the last 24 hours you are saying you haven't swallowed? Have you spoke?
Question for you. If you contacted your GP and told them you were completely unable to swallow, what do you think they would say? Would they say "oh well, just hang on for that general neuro appointment"? Or do you think their response might be more proactive?
I can swallow and I was out of town until today my throat seems collapsed and uncoordinated... Everything is going downhill I know I have it so my appointment on the 27th is just a formality I guess..
MyNameIsTerry
18-07-17, 06:42
So, you can swallow then. But at certain times you perceive you are struggling?
Perhaps our ALS clued members can explain whether the ability to swallow comes & goes like that when you experience a complete inability to swallow? I know what I'm betting my money on.
If you suddenly worsened to such a level, why wouldn't you be banging on your GP's door? Why would you just wait?
Because of doubt. ALS sufferers don't join this forum. Those who "think" they "may" have it in absence of any evidence join these forums.
Well when I swallow it feels like there's something stuck in my throat and theres a clicking noise when it happens so I'm concerned about that.
Well when I swallow it feels like there's something stuck in my throat and theres a clicking noise when it happens so I'm concerned about that.
So not "complete failure of all my bulbar muscles" then?
There are some that are in a mental position to help themselves but unfortunately, there are many that are not and may never be. The OP has been posting about this fear for well over a year. I know, you know, we all know it's not ALS. Sadly, the only person who doesn't believe that is the OP. No amount of positive reassurance or cyber slaps upside the head will make a difference I'm afraid. One can only hope that the OP will seek professional help.
Good luck and as always...
Positive thoughts
Well when I swallow it feels like there's something stuck in my throat and theres a clicking noise when it happens so I'm concerned about that.
That's not a complete failure of any muscle, it isn't even a slight failure. What you're most probably experiencing is a common throat symptom of anxiety. People who worry excessively about throat cancer get this very often, as they're focusing all their attention on swallowing. Doing so will make swallowing uncomfortable.
Chances are you're probably swallowing and gulping a lot more than anyone else because you're obsessively checking to make sure that you can still do it. The noise you hear is probably coming from the cartilliage within your larynx.
Again, none of this even remotely points at ALS, and in fact, once again, points directly at anxiety. Please try even a little harder to stop trying to convince us and yourself that you have ALS. You don't, a neurologist wouldn't even begin to consider that you did based on these symptoms.
I'm confused by people's responses were deleted to me?
And when I swallow it feels like my throat is completely closing because my soft palate is weak... I'm so scared tbh. I know I have bulbar ALS... I'm just concerned that I'll never grow up, or see my family grow...
I'm confused by people's responses were deleted to me?
And when I swallow it feels like my throat is completely closing because my soft palate is weak... I'm so scared tbh. I know I have bulbar ALS... I'm just concerned that I'll never grow up, or see my family grow...
Can you stop with the amateur dramatics please? If you are genuinely concerned then there really isn't any need to attach that type of drama to your posts to make everyone sit up and take notice.
I'm being very serious, if I go to the neuro and theres nothing wrong and have a clean EMG I'll never worry about it again.
I'm being very serious, if I go to the neuro and theres nothing wrong and have a clean EMG I'll never worry about it again.
So am I.
Is there any need to keep repeating that you're certain you have ALS and that you'll waste away etc? You aren't even trying.
I would bet my life savings that a neurologist won't even give you an EMG, you'll most probably get a thorough neurological exam testing your strength, reflexes etc and be told you're fine.
You told us all that you had "complete bulbar loss" yesterday, yet all that's actually happening is a bit of a tight throat. As I said, amateur dramatics, there really is absolutely no need for it.
If I go to the neuro and theres nothing wrong and have a clean EMG I'll never worry about it again.
That's not how this health anxiety thing works.
Seeking reassurance is like playing whack-a-mole and it will pop up elsewhere with a new fear.
Once you have your all clear for this you need to then address your anxiety.
Yes I will focus on my anxiety, but this is so scary like there's a 50/50 shot I think I have ALS, like I fail the EMG. All I can do is see that for my foreseeable future tbh.
:hugs:
this is so scary like there's a 50/50 shot I think I have ALS...
50/50? Heck, c'mon, you're at least 86.6543 sure based on your posts. I recall you from AZ. I posted many of the same things in response. I find it "interesting" that you've not acknowledged any of my posts :huh:
Just don't pull a Stroud, come on and tell everyone you have ALS/told ya so and disappear only to reappear on another forum. If you recall, Stroud had a FB page. It was obviously apparent he was fine ;)
Positive thoughts
MyNameIsTerry
19-07-17, 05:02
I'm confused by people's responses were deleted to me?
And when I swallow it feels like my throat is completely closing because my soft palate is weak... I'm so scared tbh. I know I have bulbar ALS... I'm just concerned that I'll never grow up, or see my family grow...
You will need to ask Admin why they took that action.
How do you know what it feels like to have you throat close up?
---------- Post added at 04:59 ---------- Previous post was at 04:51 ----------
That's not how this health anxiety thing works.
Seeking reassurance is like playing whack-a-mole and it will pop up elsewhere with a new fear.
Once you have your all clear for this you need to then address your anxiety.
^ There in lies your problem OP. But I would say an all clear is not even needed and addressing your anxiety should be now.
Your first big battle is the denial you are in which is obvious. When you've seen highly trained doctors your average person walks away feeling fine, not that most would have even considered something like ALS. You can't accept this person's experienced view that outranks all of us on here combined.
Then comes the neuro. Relieved? Next comes "what if" - he was a crap neuro, what if I'm so unique I need the top man in his field, what if they messed up the scans, what if my results got mixed up with another patient, and on & on.
If you had the capability to just accept you didn't have ALS, we wouldn't be seeing you here and you would have taken a GP's word for it.
Until you learn to accept you have a problem with your thinking, you are fighting your own recovery.
---------- Post added at 05:02 ---------- Previous post was at 04:59 ----------
That's not a complete failure of any muscle, it isn't even a slight failure. What you're most probably experiencing is a common throat symptom of anxiety. People who worry excessively about throat cancer get this very often, as they're focusing all their attention on swallowing. Doing so will make swallowing uncomfortable.
Chances are you're probably swallowing and gulping a lot more than anyone else because you're obsessively checking to make sure that you can still do it. The noise you hear is probably coming from the cartilliage within your larynx.
Again, none of this even remotely points at ALS, and in fact, once again, points directly at anxiety. Please try even a little harder to stop trying to convince us and yourself that you have ALS. You don't, a neurologist wouldn't even begin to consider that you did based on these symptoms.
With the cycles in my anxiety since going on this med I've found when the adrenaline is up, the pain is up with it. And that's normal aches & pains, it's like switching to HD.
The more we try to manually control autonomous functions, the more they ache. We don't do them quite the same. We force them. Manual breathers know just how much backache that can bring.
Yes I will focus on my anxiety, but this is so scary like there's a 50/50 shot I think I have ALS, like I fail the EMG. All I can do is see that for my foreseeable future tbh.
No there's like a 0.0000000005 / 99.9999999995
So in two days I have an appointment, and I feel like my speech is getting worse but not too bad. I'm really worried though that they're gonna find clinical weakness in any limb of my body and I'll be diagnosed. If they find nothing what could you all suggest to do to cure the anxiety that has been plaguing me for this year and a half?
Well, let's cross that bridge when we come to it. Just keep yourself busy till you see the doc. Then come back here and tell us what s/he says.
I think step one for you would be to find a good therapist.
Let me fix that for you...
So in two days I have an appointment, and I feel like my speech is getting worse but not too bad. I'm really worried though that they're gonna find clinical weakness in any limb of my body and I'll be diagnosed. WHEN they find nothing what could you all suggest to do to cure the anxiety that has been plaguing me for this year and a half?
I have a "Told ya so" waiting to be posted ;)
As far as your anxiety? Real life help in the form of therapy with a mental health professional and meds if needed.
Positive thoughts
It's just hard for me like this could be my last full day without an ALS diagnosis, I'm starting to get scared.. And antsy I already have an appointment August 8th just in case.
It also could be the first day of the rest of your life. Cup should be half full dude. There's not point in catastrophizing.
I know to almost all of you, you don't think I have any neurological disease, but I'm getting more and more scared for my appointment tomorrow so could y'all say some prayers for me that my body is fully healthy and my mind will one day be at easy I'll update as soon as I leave the neuros office.
MyNameIsTerry
27-07-17, 05:03
When you go through it and get told you don't have it, ask he/she how many patients they have seen with anxiety and read about in their profession. Ask them how these people stood out immediately before they even started the first test and how they knew they were going through the motions. I bet they are well aware of it all.
Good luck. I have no doubt you will get the all clear. And I'm pleased to hear you have booked an appointment with a therapist. Many would come back on here and keep obsesing over it without taking action against the real issue, their anxiety.
Do let us know when you get the all-clear, and I hope the therapy goes well. I don't do prayers, but I do send my best wishes and hope you manage to beat this anxiety thing. Good luck.
So I just finished by exam and the neuro said it was normal. My mother was there so th tried to dishearten me because she said it was anxiety. Well she heard be speak and did the neuro exam and said everything was normal. A normal exam, but I'm still getting an EMG on the 30 of August because I do get pins and needles everytime I sleep at night in my hand. The one thing I didn't get to discuss was my fear of tongue deviation, but I feel really at ease now. And I am going to counceling on August 7th and if I get a clean EMG this would be even better... I pretty much know now that it's OCD. So you can all say I told you so especially you josh!
I have a "Told ya so" waiting to be posted ;)
Here's you "Told ya so!" ;)
Positive thoughts
I'm still frightened but I know that it's anxiety she also said no need for a follow up unless the EMG is dirty so I think that's good news as well!
When is your first therapy appointment?
Positive thoughts
I didn't even have hyperflexia as well so I guess that completely rules out ALS completely
While I am glad you have that off your chest, I am confused that such a simple thing as not having hyperreflexia is what convinced you, but nothing nobody else has told you 😂 your primary care dr could tell you if you had hyperactive reflexes
That's great news, mpeckish, and must be such a tremendous relief for you. Did you have tongue twitches, by any chance?
If you stick your tongue out it will tremble.
Mine does all sorts of weird stuff, even at rest, plus it deviates a little when I poke it out
I'm glad you got some relief. Your EMG will be fine . Now go and enjoy your life and try to put all this behind you.
MyNameIsTerry
28-07-17, 04:51
While I am glad you have that off your chest, I am confused that such a simple thing as not having hyperreflexia is what convinced you, but nothing nobody else has told you 😂 your primary care dr could tell you if you had hyperactive reflexes
That would be the skewed thinking seen in Cognitive Distortions. Thinking is negatively skewed and biased towards fear. Tunnel vision. I suspect it you had posted that this meant he didn't have it, he would have felt no benefit because he wasn't feeling the short lived reassurance this appointment has given.
The challenge is what comes next as that fades away and doubts seep back through. Reminding the person of this point they accepted before tends to have as much impact as any other point has.
I'm glad to hear you are feeling better about this OP. Please stick to the therapy plan though as OCD doesn't just go, it's needs work so that you can tackle these obsessions when they arise so that you no longer chase for the reassurance or need others like this forum to reassure you.
Good to hear! Glad the therapy appointment is coming up soon. In the meantime, check out this great book on OCD, called Brain Lock.
I'm sure you will get an all-clear on the EMG. I get pins and needles when I sleep every night too in my hands. I end up laying on my arms in ways that I cut off my circulation.
I'm doing well and all the only thing is wished they checked my tongue but oh well.
What did they check, if not your tongue?
Cranial nerve IX, X, XI. I understand your anxious but asking me this won't help you. I also was kinda still am worried my tongue is deviating. But if it was bulbar both sides would be effected.
Cranial nerve IX, X, XI. I understand your anxious but asking me this won't help you. I also was kinda still am worried my tongue is deviating. But if it was bulbar both sides would be effected.
Did you mention your speech to the neuro? What did he say?
Do you still feel like it isn't proper?
Did you mention your speech to the neuro? What did he say?
Do you still feel like it isn't proper?
If his speech was noticeably deteriorating would he actually have had to mention it...?
MyNameIsTerry
29-07-17, 14:05
If his speech was noticeably deteriorating would he actually have had to mention it...?
Exactly. Doctors are trained to look for visual & verbal clues, it's part of how they assess for more serious mental health conditions for a start. GP's know to do this so they can refer people on.
I would put money on a neurologist ticking off many boxes in his/her ALS checklist before you've even started talking about symptoms. They see the whole cycle of ALS, they know how real ALS appear when they sit down & start talking.
Yeah everything was good, I still have the speech symptoms but I understand it's myself over analyzing now. Like when you focus on English and omitted sounds that you didn't notice before you can really screw yourself up.
---------- Post added at 13:53 ---------- Previous post was at 13:51 ----------
Another thing is I started worrying about ALS in my left hand and she said the strength and reflexes were fine... ALS fear migrate everywhere we don't feel adequately tested so I know if the arm EMG is clean I don't have ALS. I'll still try to ask to get one in my tongue for good measure though!
One question even after you had confirmation you were healthy did the symtopms continue?
---------- Post added at 23:13 ---------- Previous post was at 22:53 ----------
Like my OCD is telling me my speech is still weird so she missed something... I hate this disease.
One question even after you had confirmation you were healthy did the symtopms continue?
---------- Post added at 23:13 ---------- Previous post was at 22:53 ----------
Like my OCD is telling me my speech is still weird so she missed something... I hate this disease.
That's the problem many people have on here who have HA OCD. They say, "I'll know I don't have this if only I have this test or get this checked." Then they do, and they get the all clear, but it's done nothing to stop their OCD. Getting something checked is only a band-aid; it does nothing to stop the problem, which is the OCD. So they either think the doctor missed something or they move on to another disease or health condition. That's why the reassurance cycle that Terry explained on here doesn't work.
Yes I fully understand! I wish I coulda recorded her response an elderly Chinese lady neurologist examined me and she said no need for a follow up, but OCD is powerful! I think especially for the ALS worries that should be a great sign! But OCD is so awful... She said I'll only need a follow up if the EMG is dirty! But I know if I have a clean EMG on my arm I'll live because this is where my ALS worry started. For all these still reading or will read this in the future get in therapy visit a neuro quickly! Move on because you'll be like me 18 months later 20 years old worrying myself to death for no reason ruining my college expirence over a disease I'll probably never have
MyNameIsTerry
30-07-17, 05:27
Yes I fully understand! I wish I coulda recorded her response an elderly Chinese lady neurologist examined me and she said no need for a follow up, but OCD is powerful! I think especially for the ALS worries that should be a great sign! But OCD is so awful... She said I'll only need a follow up if the EMG is dirty! But I know if I have a clean EMG on my arm I'll live because this is where my ALS worry started. For all these still reading or will read this in the future get in therapy visit a neuro quickly! Move on because you'll be like me 18 months later 20 years old worrying myself to death for no reason ruining my college expirence over a disease I'll probably never have
Over here a GP wouldn't even contemplate sending someone to a specialist in this scenario, or at least they shouldn't as it's a waste of public money.
---------- Post added at 05:27 ---------- Previous post was at 05:21 ----------
Yeah everything was good, I still have the speech symptoms but I understand it's myself over analyzing now. Like when you focus on English and omitted sounds that you didn't notice before you can really screw yourself up.
---------- Post added at 13:53 ---------- Previous post was at 13:51 ----------
Another thing is I started worrying about ALS in my left hand and she said the strength and reflexes were fine... ALS fear migrate everywhere we don't feel adequately tested so I know if the arm EMG is clean I don't have ALS. I'll still try to ask to get one in my tongue for good measure though!
Why do you need one for your tongue though? That's the anxiety driving it. It will just find another "in" through another worry or body part and you start chasing tests all over again.
I'm really pleased to see some of the things you are saying now. Some would have come straight back from that appointment and started doubting it straight away. It's still going to keep triggering worry because there is a cycle of learned behaviour & fear involved and that has to be worked on, if it went all on it's own from this visit...you don't have an anxiety disorder.
So, if doubts & thoughts come, accept them as best you can as being mental health issues to work on in therapy.
I would mostly agree but as soon as the test was happening anxiety gone, after extreme anxiety and now kinda back to normal still frightening though... I mean OCD is awful but hopefully I will overcome it... The appointment didn't really give relief but I now know that it isn't ALS..
And our point is that the appointment is not going to give you relief. The cause is not a medical issue; the cause is OCD. What helps OCD is therapy, medication, lifestyle changes, mindfullness, etc.
Hey guys I was in my therapy appointment and through I'd just give an update, my therapist again doesn't think I have als at which is good. I'm still concerned over my speech though like with words "mostly" "secondly" "firstly" like in those words do you hear the t or d. I know it's probably normal English but that's what's worrying me.
Good for you to be in therapy! What does your therapist think about you posting on the forum?
Positive thoughts
MyNameIsTerry
09-08-17, 17:04
Hey guys I was in my therapy appointment and through I'd just give an update, my therapist again doesn't think I have als at which is good. I'm still concerned over my speech though like with words "mostly" "secondly" "firstly" like in those words do you hear the t or d. I know it's probably normal English but that's what's worrying me.
Many people say "mos-ly" and "firs-ly".
What does she make of your perceptions of such things?
Idk because in my head I believe that when I see a word written in English that you have to pronounce all the sounds even though that isn't the case. Like the phrase second shift do you hear the d... my therapist said that this wasn't slurring and that my problem would be to distinguish what's an OCD and anxiety symptom from body noise..
MyNameIsTerry
09-08-17, 18:55
Your therapist is trained to know and unlike us has heard you talking. I bet he/she also spend some time listing to those words when you weren't aware of having to say them :winks:
When people talk fast, the miss letters or the letter before or after may be louder to them e.g. "second shift" becomes "second shift" if you see what I mean?
Did she give examples of what he/she meant by body noise?
The thing is that you are still focusing on your speech. You still are trying to reason that you have ALS. You don't have ALS, and you really need to work on that acceptance with your therapist. When you finally accept that, you can start working on the medical condition that you do have, which is OCD.
Blue23Blent
18-09-18, 14:31
I'm in the same boat. I've been obsessed over my throat, tongue, voice box, lungs, everything since my mucocele. I haven't really had these concerns before my mucocele and then it just all started when I noticed things about HPV causing throat cancer because I don't smoke and drink heavily. The only thing that would cause it would be HPV so I then freaked out!
This was back mid June and I'm still dealing with issues. I've been to Regular Doctor (3 times) and ENT. The ENT scoped my throat back in July and said everything looked fine but it doesn't feel fine so I just went back to my GP and she felt my neck and stuff and said it feels normal.
She scheduled a CT scan if that would help my anxiety to help clear everything else out and then they'll know.
It's a crazy summer I've been on!!! It doesn't seem like it's getting better.
But the tongue deviation is real how can it not be seen. It isn't like I wanted this I just noticed, like does the tongue deviate in ALS?
My first bout with HA was when I was 17 and thought I had a brain tumor after losing a classmate to it. That was 30 years ago, and in that time I have gained a lot of perspective and tools to help deal with the HA. I would not necessarily say I am "cured" of HA, but in that time, I have learned to recognize it, and certainly found peace.
In that time while I learned to recover myself from the anxiety, I had many, many, MANY symptoms. All of them were real. During my brain tumor days, I had a headache that was with me every single day for four months. I was not making it up, it was not fake. The pain was real. The symptom was a head ache. I was positive it was a brain tumor. One needless CT later, all clear given, the pain was gone that hour and I have never really suffered many headaches in the 30 years since.
The other aspect of these symptoms, in your case tongue deviation (which I had to look up), obsessive perception comes into play. We all *know* we can see or feel our symptoms, but the truth is hyper-vigilant focusing on a symptom can make something clinically insignificant seem like something dangerous.
Moles, for example. I have many, many moles. Almost all of them have something I could find, if I looked at them with the frame of mind I must have melanoma, that would be indicative of melanoma, even though clinically, none (so far, anyway ;-) ) have been proven to be dangerous at all. But were I to obsessively check each one, I could spend hours and days finding "dangerous" moles.
At your age, there is almost no chance of anything like ALS and there is 100% chance you have a diagnosis of anxiety, which you should continue working on the best you can.
Blue23Blent
19-09-18, 16:06
My first bout with HA was when I was 17 and thought I had a brain tumor after losing a classmate to it. That was 30 years ago, and in that time I have gained a lot of perspective and tools to help deal with the HA. I would not necessarily say I am "cured" of HA, but in that time, I have learned to recognize it, and certainly found peace.
In that time while I learned to recover myself from the anxiety, I had many, many, MANY symptoms. All of them were real. During my brain tumor days, I had a headache that was with me every single day for four months. I was not making it up, it was not fake. The pain was real. The symptom was a head ache. I was positive it was a brain tumor. One needless CT later, all clear given, the pain was gone that hour and I have never really suffered many headaches in the 30 years since.
The other aspect of these symptoms, in your case tongue deviation (which I had to look up), obsessive perception comes into play. We all *know* we can see or feel our symptoms, but the truth is hyper-vigilant focusing on a symptom can make something clinically insignificant seem like something dangerous.
Moles, for example. I have many, many moles. Almost all of them have something I could find, if I looked at them with the frame of mind I must have melanoma, that would be indicative of melanoma, even though clinically, none (so far, anyway ;-) ) have been proven to be dangerous at all. But were I to obsessively check each one, I could spend hours and days finding "dangerous" moles.
At your age, there is almost no chance of anything like ALS and there is 100% chance you have a diagnosis of anxiety, which you should continue working on the best you can.
You had a headache every day for four months!? Geez. I've been dealing with throat dryness, tightness, difficulty swallowing for like 4 months now but have a CT scan now. Doctor believes it'll come back negative and then hopefully I'll be able to get past this.
I keep thinking I have throat cancer of some kind. :/
If you had bulbar you’d be very paralyzed by now. I truly do have symptoms of als not confined in one place and I had an EMG. I don’t have my results yet but I’m very frightened, I can’t even stand for more than 30 mins without needing to sit down, I twitch everywhere 24/7 and my breathing is weakened. I WISH we could trade symptoms! & this has all happened in less than 3 months! Im only 17..
If you had bulbar you’d be very paralyzed by now. I truly do have symptoms of als not confined in one place and I had an EMG. I don’t have my results yet but I’m very frightened, I can’t even stand for more than 30 mins without needing to sit down, I twitch everywhere 24/7 and my breathing is weakened. I WISH we could trade symptoms! & this has all happened in less than 3 months! Im only 17..
If you don’t have a family history of als then there’s no way you have it at 17. We’re talking one in a billion just no way. I’ve been twitching all over for around 4 years and I don’t have als. Trust this is a rabbit hole you never wanna go down.
I don’t have family history but I have had progressive weakness along with twitching and excess saliva for 3 months now and I’m just doing what I can day to day. I had an EMG and am waiting for my results, I know the odds are greatly in my favor but things happen that we cannot control, there’s a point where you know it’s not just anxiety. I post here to have support through my diagnostic processs, and of course I love reassurance but it won’t make the symptoms go away.
I don’t have family history but I have had progressive weakness along with twitching and excess saliva for 3 months now and I’m just doing what I can day to day. I had an EMG and am waiting for my results, I know the odds are greatly in my favor but things happen that we cannot control, there’s a point where you know it’s not just anxiety. I post here to have support through my diagnostic processs, and of course I love reassurance but it won’t make the symptoms go away.
When you say progressive weakness do you mean your losing the ability to do something or are you getting like fatigued?
I find it harder to do normal things everyday such as walking, sitting up, etc. I’ve been very fit and energetic all my life so this is very restricting and new to me.
I find it harder to do normal things everyday such as walking, sitting up, etc. I’ve been very fit and energetic all my life so this is very restricting and new to me.
When are you expected to get the results?
No, I got it done by a neuromuscular specialist whom was not my neurologist who wouldn’t give me any signs as to what it showed or didn’t show. I was told my results would be given this Monday but they weren’t, and now it’s just a waiting game. I’m on lazepram to help the anxiety going through all of this, but it’s very hard when you think you have a possibility of having a terminal disease.
When do you see your neuro next?
I don’t have an appointment, he’s supposed to call me with the results. He’s currently on vacation so I’m assuming that may be a factor as to why I’m not getting my results, though his nurse said that he would call regardless. When I first saw him I only had a bit of weakness and the twitching, he examined me and saw my twitching, he said I don’t have anything going on and myokymia (pretty much bfs) he said an EMG isn’t necessary. Although my symptoms progressed and my mother and I pushed for the EMG. I have had a CK level test and that was normal
Have you been tested for Lymes?
I got my EMG back today, and it showed that my muscles are healthier than they should be at my age. So als is ruled out. Gonna try to see if the symptoms get better/worse. If they get worse then back to the doctor I go
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