View Full Version : Bulbar als
I'm mad at myself for posting this as I have been able to self soothe for a few weeks now. I just need to hear rational responses.
I have been worrying about als for months. In particular bulbar. I have noticed changes.
1. My speech seems worsening terms of when I am trying to say words in a sentence they don't come out right. When I re-say it, it's fine.
2. When I used to stick my tongue out it stayed still now it is quivering when I stick it out. At rest it's fine. Why has this changed tho?
3. The sides are scalloped but look like they have lost bits of skin from the tongue.
4. When I move my tongue from side to side or tense it up it doesn't feel as strong.
I have seen Neuro already. I requested a second opinion but have no appointment through as yet.
I genuinely think I have this.
And what did the neuro say and do? It's important you detail your appointment
1) Bulbar is a sense of when you can't say a word, you can't say it again. ALS are permanent changes. So, I highly doubt this is attributed to bulbar and more to your anxiety towards it. Let me guess, you concentrate so much on your tongue now? I do too, as I too have a bulbar fear at the moment
2) Sticking your tongue out has many 'methods'. Ask a friend, gf/bf to do the same and compare. Typically, it will quiver. You say that it 'never' did. Nobody would know if it 'never did' unless you've been worrying for some time which I guess you have been?
3) Skin has nothing to do with ALS. If you mean mass, then the damage would have been done by this point and I suspect you would have noticed significant speech changes - which you haven't
4) Define this in more detail.
Answer this question:
Can anxiety cause any of these issues and how would they be caused?
There is plenty of info on this website that will help you answer the question if you are not sure.
And what did the neuro say and do? It's important you detail your appointment
1) Bulbar is a sense of when you can't say a word, you can't say it again. ALS are permanent changes. So, I highly doubt this is attributed to bulbar and more to your anxiety towards it. Let me guess, you concentrate so much on your tongue now? I do too, as I too have a bulbar fear at the moment
2) Sticking your tongue out has many 'methods'. Ask a friend, gf/bf to do the same and compare. Typically, it will quiver. You say that it 'never' did. Nobody would know if it 'never did' unless you've been worrying for some time which I guess you have been?
3) Skin has nothing to do with ALS. If you mean mass, then the damage would have been done by this point and I suspect you would have noticed significant speech changes - which you haven't
4) Define this in more detail.
Hi Ben
I have been worrying about this since nov 16. I would stick my tongue out in the mirror then and it didn't quiver. Now it does.
I seen neurologist 4 times. Last app end dec. He examined tongue and stated no fascs, no wastage and no weakness. But I think it's changed now.
I had emg and nerve test jan17. Told normal. Both legs, right arm and right hand. I requested a second opinion via my gp. The Neuro I saw is a general Neuro who specialises in MS. He did say he has worked with many mnd patients over the years. The Neuro who conducted the emg said he unfortunately diagnoses als weekly and that I did not have it. But then my bulbar region wasn't tested.
On the last point I just mean like when I tense my calf for example I can feel it tense. My tongue does tense too but I just don't think that feels as tight.
---------- Post added at 10:41 ---------- Previous post was at 10:40 ----------
Answer this question:
Can anxiety cause any of these issues and how would they be caused?
There is plenty of info on this website that will help you answer the question if you are not sure.
Thanks. I don't know if anxiety can cause these changes in my tongue tho?
Your tongue is a muscle. So anxiety can affect it in the same way it can affect any muscle.
Sent from my F8331 using Tapatalk
It's incredibly likely that there are no changes to your tongue at all. Just your anxiety is making you think there is.
You have been told by multiple individuals who know a LOT more about ALS than you, and everyone else here, that you don't have ALS. You really should believe them.
Getting a second opinion is pointless imo, they will tell you you don't have ALS but that won't make any difference to your anxiety. You will be checked out and your anxiety will immediately change the focus of your worries to a different part of your body that "looks different than before"
The path to beating this is acceptance that you have anxiety, its fairly obvious, and then trying to beat that, as opposed to continuously chasing a non existent diagnosis.
Hi Ben
I have been worrying about this since nov 16. I would stick my tongue out in the mirror then and it didn't quiver. Now it does.
I seen neurologist 4 times. Last app end dec. He examined tongue and stated no fascs, no wastage and no weakness. But I think it's changed now.
Great news. Perfect.
I had emg and nerve test jan17. Told normal. Both legs, right arm and right hand. I requested a second opinion via my gp. The Neuro I saw is a general Neuro who specialises in MS. He did say he has worked with many mnd patients over the years. The Neuro who conducted the emg said he unfortunately diagnoses als weekly and that I did not have it. But then my bulbar region wasn't tested.
Your bulbar region doesn't necessarily need to be tested to discover ALS. Did you think that you had limb ALS, told you don't, then coincidently developed bulbar ALS?
On the last point I just mean like when I tense my calf for example I can feel it tense. My tongue does tense too but I just don't think that feels as tight.
You cannot use this as a self-diagnoses. This is nothing. If it wasn't 'tensing' as 'tightly' as you say your speech would be severely affected. You're making this up in your head.
You need to trust our neurologists. You said you question his opinion yet also said he diagnoses a weekly ALS patient. So, he does know what he's doing. You need to put faith in them.
Also, ask yourself, when will you truly be happy to know that you don't have ALS? How many neurologists will it take? How many tests will it take?
I genuinely think I have this.
As I told Ben.. YOU think you have this. Several visits to a trained medical professional and scientific medical testing does not, no one here thinks so either yet YOU choose to believe you do. Best plan of action would be to go to a hospital that specializes in MNDs and discuss testing, treatment and prognosis.
Good luck and as always...
Positive thoughts
Also, ask yourself, when will you truly be happy to know that you don't have ALS? How many neurologists will it take? How many tests will it take?
This is a question I often think about when it comes to anxiety etc.
I know all about it, I've been there. Happy to say I'm very close to being out the other side now.
But its often as if we won't be happy until someone validates your fears? Until someone actually tells you you have the thing you fear.
Think about how absurd this all seems? Multiple EXPERTS have said you have have ALS but yet you don't believe them? Why?
I know its the big question when it comes to health anxiety but truthfully, with all evidence pointing to the fact that you're fine, its as if you are actively choosing not to believe them? Whats the point in going and asking if you're going to ignore their advice?
The second opinion is being requested for a neuromuscular specialist Neuro. I have no idea when the app will be.
My mouth is so dry and my toungue catches all thes time when speaking. I've even bought saliva sweets and it's making no difference. I now have burning tongue.
Catherine S
13-03-17, 22:36
Did you read Fishman's thread about ALS? Discussing signs that explain why you're more than likely not suffering with ALS? It's written by sufferers of the condition and it's an excellent insight into this issue. I recomend you read it.
ISB
I have read it but there's not a lot on bulbar.
The thing is the things you are saying are not ALS symptoms. Bulbar starts with slurring words and actual trouble swallowing.
There is WORLD of difference between clinical and perceived.
Your mouth feels weird, so what? Can you still speak? Can you still swallow? If the answer is yes to both of these things, regardless of whether it feels weird or not, means you do not have ALS! I had a very close friend die of ALS last November, there was absolutely no mistaking that he had something very clearly wrong from the very start.
It was not hiding, it arrived and within a few weeks he couldn't use his left hand. Within a few months he was in a wheelchair and about 9 months later he died.
I'm not saying this to scare you, or anyone. Can you see how there is a world of difference between fantasy and reality. Stop living in a fantasy world where the impossible becomes possible and everything is make believe and start living in the reality where you are still a fully functioning adult who has a severe anxiety issue.
Hi Ben
I have been worrying about this since nov 16. I would stick my tongue out in the mirror then and it didn't quiver. Now it does.
I seen neurologist 4 times. Last app end dec. He examined tongue and stated no fascs, no wastage and no weakness. But I think it's changed now.
Great news. Perfect.
I had emg and nerve test jan17. Told normal. Both legs, right arm and right hand. I requested a second opinion via my gp. The Neuro I saw is a general Neuro who specialises in MS. He did say he has worked with many mnd patients over the years. The Neuro who conducted the emg said he unfortunately diagnoses als weekly and that I did not have it. But then my bulbar region wasn't tested.
Your bulbar region doesn't necessarily need to be tested to discover ALS. Did you think that you had limb ALS, told you don't, then coincidently developed bulbar ALS?
On the last point I just mean like when I tense my calf for example I can feel it tense. My tongue does tense too but I just don't think that feels as tight.
You cannot use this as a self-diagnoses. This is nothing. If it wasn't 'tensing' as 'tightly' as you say your speech would be severely affected. You're making this up in your head.
You need to trust our neurologists. You said you question his opinion yet also said he diagnoses a weekly ALS patient. So, he does know what he's doing. You need to put faith in them.
Also, ask yourself, when will you truly be happy to know that you don't have ALS? How many neurologists will it take? How many tests will it take?
Great advice, hopefully you practice what you preach.
Also, looking back at your posting history. How many times have you been wrong?
So many different illnesses that you were sure you had? What made you stop worrying about them and start worrying about ALS?
Try and just think for a moment, you've been wrong EVERY SINGLE previous time and you are wrong again!
Again, I go back to a previous point, and I hope this doesn't offend. Do you want to be told you're ill? It seems like your life is dedicated to the pursuit of a diagnosis.
I'll give you a diagnosis. Extreme anxiety probably mixed with a little OCD. Go get treatment for that and all your health concerns will stop.
Catherine S
13-03-17, 23:01
.
:huh: ?
:huh: ?
I think that was aimed at LE.
Catherine S
13-03-17, 23:06
Oh, is this thread stopping you from sleeping Josh?
ISB
Oh, is this thread stopping you from sleeping Josh?
ISB
I think it's quite the opposite... SSDD basically.
LE...As far as Bulbar? Your reply shows that if you read the post, you didn't comprehend much of it at all.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Positive thoughts
The thing is the things you are saying are not ALS symptoms. Bulbar starts with slurring words and actual trouble swallowing.
There is WORLD of difference between clinical and perceived.
Your mouth feels weird, so what? Can you still speak? Can you still swallow? If the answer is yes to both of these things, regardless of whether it feels weird or not, means you do not have ALS! I had a very close friend die of ALS last November, there was absolutely no mistaking that he had something very clearly wrong from the very start.
It was not hiding, it arrived and within a few weeks he couldn't use his left hand. Within a few months he was in a wheelchair and about 9 months later he died.
I'm not saying this to scare you, or anyone. Can you see how there is a world of difference between fantasy and reality. Stop living in a fantasy world where the impossible becomes possible and everything is make believe and start living in the reality where you are still a fully functioning adult who has a severe anxiety issue.
Thanks I really appreciate what you have said. I am in therapy and had not posted for a few weeks. Yesterday my anxiety just got the better of me. I still think all these things but most of the time I can 'sit' with it. I have got paperwork to try and challenge the thoughts and look at them a different way but the fear is so real to me.
This has been going on with me since summer 16 not the tongue but I had eye issues. Then Nov 16 the tongue started. I just try to tell myself things would have progressed dramatically by now. My mouth is very dry and I'm not sure if it's just from the meds I'm taking But this means pronouncing some word aren't they way they normall sound.
---------- Post added at 10:01 ---------- Previous post was at 09:57 ----------
Also, looking back at your posting history. How many times have you been wrong?
So many different illnesses that you were sure you had? What made you stop worrying about them and start worrying about ALS?
Try and just think for a moment, you've been wrong EVERY SINGLE previous time and you are wrong again!
Again, I go back to a previous point, and I hope this doesn't offend. Do you want to be told you're ill? It seems like your life is dedicated to the pursuit of a diagnosis.
I'll give you a diagnosis. Extreme anxiety probably mixed with a little OCD. Go get treatment for that and all your health concerns will stop.
You are right and I try to look back at my posting history and it brings back the memories of the symptoms and how real they were to me. To try and talk myself out of this. I just try to keep busy every day and the thoughts just go about my head most of the time. A few months ago I could not function for the fear.
---------- Post added at 10:05 ---------- Previous post was at 10:01 ----------
I think it's quite the opposite... SSDD basically.
LE...As far as Bulbar? Your reply shows that if you read the post, you didn't comprehend much of it at all.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Positive thoughts
What does SSDD mean?
I've said before and I will say it again I find Josh's responses to me to be rude. i just wouldn't comment on someone post if I felt the way he does.
Thanks Fish I have re-read it and take on board about examining the tongue whilst sticking out. The bit about it being a bit being able to produce the sounds again I have read from various people diagnosed that it would just happen when they were tired at first or when they had had a couple of drinks. These are the ones who freak me out.
I've said before and I will say it again I find Josh's responses to me to be rude. i just wouldn't comment on someone post if I felt the way he does.
His comments were rude and totally unnecessary hence they have been deleted and he has been banned from this thread.
If anyone wishes to discuss this please pm me privately and not on the forum.
Elen
I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration. At times I've given you what I consider good advice. I've seen others here give you excellent advice. To be honest it seems that none of the advice you receive has any impact on you at all. Like someone else said it's almost as though you want people to confirm that you have ALS. Of course, I know that you don't want that. What you are waiting for is someone here to say the "one" thing that will reassure you that you don't have it. That isn't going to happen. Stop sitting around waiting to die and go out and live your life. My psych once told me that I should stop being afraid of dying because I was already dead. So are you. Think about it.
I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration. At times I've given you what I consider good advice. I've seen others here give you excellent advice. To be honest it seems that none of the advice you receive has any impact on you at all. Like someone else said it's almost as though you want people to confirm that you have ALS. Of course, I know that you don't want that. What you are waiting for is someone here to say the "one" thing that will reassure you that you don't have it. That isn't going to happen. Stop sitting around waiting to die and go out and live your life. My psych once told me that I should stop being afraid of dying because I was already dead. So are you. Think about it.
:emot-nod: The ALS rabbit hole is brutal on the sufferer as well as those around them. And yes, it seems like no matter what is said, the ALS fear sufferer argues with all their worth coming just short of "I'll prove you wrong". Thus the many multi page threads on the subject. It's incredibly sad to witness and the frustration is evident.
Swajj, your psych was spot on and it echoes what I've said many times here. I have real physical issues that can put me six feet under. Many here are already that way above ground. The difference is that the treatment to overcome it is far less difficult and physically painful than what I went through I assure you.
Positive thoughts
MyNameIsTerry
14-03-17, 12:21
I've read many of your threads. I didn't see Josh's posts but I would say that they were the result of absolute frustration.
Not good to make an assumption without seeing the wording, swajj.
---------- Post added at 12:21 ---------- Previous post was at 12:20 ----------
What does SSDD mean?
Same Shit, Different Day.
An alternative to Same Old, Same Old. Just a turn of phrase.
tryingtosurvive1
15-03-17, 04:36
Neurological tests are pretty sensitive. I have hereditary neuropathy (a legit neuromuscular disorder, though not a deadly one) and it popped up on the nerve conduction study. Similarly ALS looks VERY distinctive on EMGs. If your EMG is normal, you're normal.
Does it help to say the "what about bulbar? did we forget about bulbar?" fear is part of the ALS rabbit hole? That's why on aboutbfs.com there's a joke "no, it's not bulbar." It's really not.
That's
I have been trying not to post but I definitely am slurring more and more words. It frightens me and I hate it. It's getting to the point I hate hearing myself speaking. The words just are not my normal.
---------- Post added at 22:10 ---------- Previous post was at 22:09 ----------
I genuinely think there is something wrong. If it's not als then there is something not right.
tryingtosurvive1
24-03-17, 02:26
Has anyone else notice this or it is only your perception?
This happened to me . I would stumble on words and wouldn't pronounce things accurately. It seemed like I was trying to say the word in NY head and then say it aloud and 30% of the time I would slur it. The more you think/ worry about it the more often it will occur.
Has anyone else notice this or it is only your perception?
No one else has noticed it yet. Yesterday a man asked me if I knew where I cash machine was and I replied saying yes there is one just along at the newsagents. The last part of agents came out funny. I was speaking on the phone to a Forbes last night and I was saying my daughter might complain when my son goes on a play date as she will be left on her own. The own came out funny.
I can say the words individually. They sound fine. But I'm finding words are running together at times when I am speaking in sentences.
I honestly believe things are progressing. A few months ago I would notice the odd word sounded funny and not every day. Now it is everyday. I can still whistle, puff out cheeks etc. But my lips look bagy too not as tight. My tongue also does not look as it did in December for example.
I know I have anxiety but I believe something is very wrong and that it is being passed off as anxiety.
---------- Post added at 07:39 ---------- Previous post was at 07:35 ----------
This happened to me . I would stumble on words and wouldn't pronounce things accurately. It seemed like I was trying to say the word in NY head and then say it aloud and 30% of the time I would slur it. The more you think/ worry about it the more often it will occur.
Is this still happening to you?
I do know I am very focussed on my speech. I hope and pray that is all it is byt thigs seem to be getting worse.
No because I noticed what I thought was a dent in my calf and started freaking out about it and my bulbar worries went away along with the speech difficulties. You have to get control over this because this ALS anxiety will ruin you. Enjoy the day and don't let this fear bother you
You just don't have ALS
Nothing of what you are saying sounds like ALS.
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