Old 10-08-2010, 10:09 AM #1 (permalink)
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Default Bulbar symptoms? Plus other symptoms

My mouth feels weaker and weaker recently, Over the past 2-3 weeks it seems to be getting worse, I seem to be struggling with chewing and swallowing but my speech is ok, no-one has said anything about my speech.

My face/mouth/throat just seems so weak and i am very worried that this is PBP.

My face and cheekbones ache a lot too and they also feel weak.

I do have other symptoms too such as dizziness, twitches in the lips, face, neck and other parts of the body.

My arms and legs feel weak too and i just feel out of it all the time.

I know i am only 29 but that doesn't mean i cannot have PBP or any form of ALS/MND.
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Old 10-08-2010, 12:42 PM #2 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

You really need to stop obsessing about what you think you are experiencing. You think you feel weak, with ALS you know you are weak, there is no doubt. You really need to see a doctor and accept what you are told.

Also, I hate to be harsh but you have started enough threads. If you start another one I will be forced to delete it.
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Old 10-08-2010, 12:46 PM #3 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

An example of weak arms, you can not do 1 push-up, an example of weak hands, you can not open a bottle of water, or pull your pants zipper up. An example of weak legs, you can not walk up 3 stairs without some kind of assistance.
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Old 10-08-2010, 01:16 PM #4 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

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You really need to stop obsessing about what you think you are experiencing. You think you feel weak, with ALS you know you are weak, there is no doubt. You really need to see a doctor and accept what you are told.

Also, I hate to be harsh but you have started enough threads. If you start another one I will be forced to delete it.

Sorry if i annoyed you JoelC, No offence intended.

However i am not obsessing about what i think i am experiencing, I am experiencing quite a few things over the past few weeks and i am worried and concerned about it.

I have seen a couple of doctors but they haven't said much and haven't given me any explanation for my symptoms, One did say that i had "No Neurological Symptoms".
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Old 10-08-2010, 01:23 PM #5 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

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An example of weak arms, you can not do 1 push-up, an example of weak hands, you can not open a bottle of water, or pull your pants zipper up. An example of weak legs, you can not walk up 3 stairs without some kind of assistance.
Thank you for your post, I'm more concerned about my mouth/fascial/throat weakness.

But i just tried to do a push up and i managed to do a few but not many and i can walk up the stairs.
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Old 10-08-2010, 01:51 PM #6 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

I guess some good questions for me to ask would be:-

1.Do you always get problems with speech first in PBP? Could you develop problems chewing and swallowing before problems with speech?
2.I know my mouth is weak because it takes me longer to chew things and swallow things and my mouth feels like it aches whenever i eat like my muscles are tired.
3.My fascial muscles feel weak but how would i know if they are actually weak?
4.Is there any tests or self examinations i could do to see whether i do actually have PBP?
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Old 10-08-2010, 02:03 PM #7 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

My husband was unable to "hack a lugie" or clear any thing from his throat. His speech was affected first. His face has never felt weak.
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Old 10-08-2010, 02:18 PM #8 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

Things that seem very weak, but a doctor tells you aren't, are not "weak" in the medical sense of the term. The very fact that you feel weak is a great sign that you aren't. In the medical world, a pencil neck geek and a weight lifter are both the same "full strength". The point is you can use your muscles to fight gravity and resistance and win. They do their thing. That is the defintion of not weak.

Weak lips/cheeks causes sounds to come out wrong, people around you can hear the difference (you feel like you're doing fine, generally). They also cause drooling and drinks dribbling out of your mouth uncontrollably.

Weak tongue/throat cause you to fail at swallowing in some way. It doesn't just feel hard, or even slow, something doesn't work. It causes hacking coughs when you drink, the food doesn't leave the back of your mouth, you choke on foods, stuff like that.

Chewing weakness doesn't feel like that, it feels like the food is rubbery, the pasta is al dente... etc. You end up swallowing a lot of whole food.

That isn't anything like a complete list, but it should give you the flavor. Motor neuron weakness doesn't produce feelings of weakness, it produces failure, which you usually blame on some outside source at first. I know your next question "but what if this is a minor version/early/first step/etc?" As a PLSer, I have gotten to linger in the early stage for longer than an PALS gets to. It still doesn't feel like weakness, although with UMN, a lot of pain can be involved. But the pain comes if you use it or not... spastic jaw is hard to miss, it is like having it wired shut and only chemicals unwire it. You are just doing your thing one day, like singing in church, and you reach for the high note and nothing comes out. You yawn, and there is silence in the middle. Nothing feels wrong, but you can't do something you could before.

Last winter, I met my speech pathologist. She did an exam, and measured serious tongue weakness. Before that day, I didn't know it was weak at all, let alone clinically weak! I felt normal, but to an objective medical professional, it wasn't dong what it was supposed to be doing. It didn't move food between my teeth, didn't gather it for swallow well, and never finished the full swallow of food. No swallow of mine was actually getting all the food out... it turns out that the end of every swallow of food was just sitting at the back of my mouth, waiting to be breathed down. Yet, I thought I swallowed fine most of the time, and was just hacking occasionally on liquids. I felt fine. I still feel fine, and it is hard to remember that I'm not.

It seems like, with the motor nerves, that once your brain has sent the "do it" signal, it just feels satisfied that it's done. So weakness doesn't feel like anything you'd imagine it would. If anything, you feel like you've given it your normal force... you don't feel too weak to open the jar, you feel like the jar was tightened by a giant and curse the manufacturer.

But it seems your doctors have already told you that you don't have neurological symptoms. You don't believe them. You don't believe us that it doesn't fit the experiences of MND. Who will you believe? A speech pathologist? Go to one! They are bulbar area experts. Otherwise... you have to see where Joel is coming from.
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Old 10-08-2010, 03:17 PM #9 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

Quote:
Originally Posted by Tokahfang View Post
Things that seem very weak, but a doctor tells you aren't, are not "weak" in the medical sense of the term. The very fact that you feel weak is a great sign that you aren't. In the medical world, a pencil neck geek and a weight lifter are both the same "full strength". The point is you can use your muscles to fight gravity and resistance and win. They do their thing. That is the defintion of not weak.

Weak lips/cheeks causes sounds to come out wrong, people around you can hear the difference (you feel like you're doing fine, generally). They also cause drooling and drinks dribbling out of your mouth uncontrollably.

Weak tongue/throat cause you to fail at swallowing in some way. It doesn't just feel hard, or even slow, something doesn't work. It causes hacking coughs when you drink, the food doesn't leave the back of your mouth, you choke on foods, stuff like that.

Chewing weakness doesn't feel like that, it feels like the food is rubbery, the pasta is al dente... etc. You end up swallowing a lot of whole food.

That isn't anything like a complete list, but it should give you the flavor. Motor neuron weakness doesn't produce feelings of weakness, it produces failure, which you usually blame on some outside source at first. I know your next question "but what if this is a minor version/early/first step/etc?" As a PLSer, I have gotten to linger in the early stage for longer than an PALS gets to. It still doesn't feel like weakness, although with UMN, a lot of pain can be involved. But the pain comes if you use it or not... spastic jaw is hard to miss, it is like having it wired shut and only chemicals unwire it. You are just doing your thing one day, like singing in church, and you reach for the high note and nothing comes out. You yawn, and there is silence in the middle. Nothing feels wrong, but you can't do something you could before.

Last winter, I met my speech pathologist. She did an exam, and measured serious tongue weakness. Before that day, I didn't know it was weak at all, let alone clinically weak! I felt normal, but to an objective medical professional, it wasn't dong what it was supposed to be doing. It didn't move food between my teeth, didn't gather it for swallow well, and never finished the full swallow of food. No swallow of mine was actually getting all the food out... it turns out that the end of every swallow of food was just sitting at the back of my mouth, waiting to be breathed down. Yet, I thought I swallowed fine most of the time, and was just hacking occasionally on liquids. I felt fine. I still feel fine, and it is hard to remember that I'm not.

It seems like, with the motor nerves, that once your brain has sent the "do it" signal, it just feels satisfied that it's done. So weakness doesn't feel like anything you'd imagine it would. If anything, you feel like you've given it your normal force... you don't feel too weak to open the jar, you feel like the jar was tightened by a giant and curse the manufacturer.

But it seems your doctors have already told you that you don't have neurological symptoms. You don't believe them. You don't believe us that it doesn't fit the experiences of MND. Who will you believe? A speech pathologist? Go to one! They are bulbar area experts. Otherwise... you have to see where Joel is coming from.
Thank you for your very informative post, It really is appreciated.

I can say that no-one has told me that my speech is any different and i have even asked a few people and they said it sounds normal, I don't drool either.

Regarding drinks i have coughed a couple of times after drinking but i have just drank a Cappuccino and never had any hacking cough when drinking it, I have had a bit of a cough since last week though when i had a bit of a sore throat and a cold.

I do occasionally choke on foods but it's not often at all, I manage to eat things like chips, meat and other things without choking, I do get pain/soreness in my throat and mouth quite a lot though and it can hurt anytime.

A doctor hasn't really examined my mouth/throat/jaws/speech although if there was a difference in speech or slurring i'm sure a doctor would pick up on that but i want them to look at me more thoroughly.

If i had early stage PBP would a doctor be able to tell by looking at my tongue? I'm just wondering what signs the doctor would look for?
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Old 10-09-2010, 01:16 PM #10 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

Like I said, a speech pathologist is the person you're looking for. They do clinical assessment, and if they find any bad signs, they give you a video xray with barium to see what's going on. Lots of things cause pain and bad feelings swallowing, and they figure out what is going on with it... called a "modified barium swallow". You don't sound like a motor neuron case. Maybe something muscular? Either way, they are the people to see to put your mind at rest.

Given that you feel so poor, but can eat and drink so many things and talk well, I don't think you need to be worrying about this. But go the the SP, and get the thought expunged from your mind so you can go back to enjoying life.
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Old 10-09-2010, 02:12 PM #11 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

Thank you.

I have quite a few symptoms but i am most concerned about my face/mouth/throat.

Talking just feels tiring and eating feels tiring, Eating food feels difficult as my jaws and mouth muscles do feel very weak and it feels like it's slow and a little difficult to chew and swallowing feels hard too, I don't dribble or have coughing when i drink and i don't really choke on food.

In the early stages of PBP how would i know if i truly had it? As i said my doctors and other people haven't commented on my voice, I feel like i am having difficulty chewing and eating and my tongue tingles and feels numb sometimes and just doesn't feel right, Should i eat something infront of a doctor to see if they could examine me that way? I want my doctor to examine me properly and give me an honest opinion.

I have like a big ache/pressure in my face, It's like my head and cheekbones and face and jaws feel very achy and like they are stiff or something, I do feel light-headed/dizzy most of the time as well.

Other parts of my body feel weak too such as my arms and legs but i can walk stairs and walk around outside although i feel a bit unsteady and i can lift shopping bags with my arms and carry them.

I get twitches and tingling in my face and twitches in other parts of my body and tingling in other parts of my body along with the occasional muscle cramps and pins and needles.

I do get pain in my mouth and throat now and again and get pains in my knees quite often along with arm and elbow pain on and off.

It takes me 10-15 mins to eat a meal which seems slow for me, Tonight i had chips and curry sauce and i felt like i struggled and it took me that amount of time to eat it.

I tested my gag reflex earlier and i certainly do have one.

I am seeing my doctor again this week but i would like to know:-

1.What should i ask them?
2.What should i get them to look at?

A doctor won't refer you to a Neurologist unless they feel it is required.

Also:-

Would a doctor be able to spot early signs of PBP by looking at my tongue or my mouth? Would they be paying attention to my voice?


Here in the UK i probably wouldn't be able to see a speech pathologist unless my doctor thought i needed to see one as i am not private so have to go through the NHS.

I am really seriously worried about having PBP or any form of MND, I am only 29 and have a very very young child.
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Old 10-09-2010, 07:59 PM #12 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

Your symptoms don't sound like a MND. I don't know much about PBP in particular, but I started upper motor neuron bulbar and pseudo bulbar at the beginning of this year, and have read many accounts of PALS with bulbar onsets. I have also read a lot about UMN and LMN signs to make sure I'm staying on the UMN side of the line. Your description doesn't fit any of what I have read and learned and experienced. Like all too many people, you have read too much about a disease type that internet search engines favor over more common diseases.

A thorough ENT (ears/nose/throat) checkup will reveal any bulbar/pseudobulbar symptoms, and a doctor would start looking for causes from there. Explain your worries, your symptoms, and then take what they say seriously. Weakness, inflammation, whatever is going on is best examined by an objective physician.

"How can I know I don't have -blank-?" is a terrible question that can only cause trouble and anxiety. It doesn't walk like a duck, quack like a duck, and that means that rather than having discovered a mute, paraplegic duck, it is much more likely not a duck. The anxiety and worry itself is worse than any symptom you've described, and can cause numerous physical complications.
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Old 10-10-2010, 10:52 AM #13 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

RWG,

There are other conditions, much more likely, that can cause the problems you describe. Have metabolic disorders been explored? Diabetes for example?

Also Myasthenia Gravis, from what I know of it, would fit with the chewing difficulties you talk about.

So, autoimmune, metabolic, and also post viral (had you been sick in the months previous to all of this starting?) are all areas that should be looked at. And NONE of them are necessarily a quick discovery either. Sometimes they are, if the person is experiencing classic textbook symptoms.

Will your doctor refer you to a rheumatologist? I think it would be helpful in moving you forward to getting some answers. And, do what you can to insist on being seen by an ear nose and throat specialist. (even before the rheumatologist) both of those specialties will know whether you need to keep exploring their field of expertise, or be referred on to neurology or an infectious disease specialist.

I understand your concerns with having a small child. The responsibility you feel to be there certainly causes you anxiety over the unknown.

About whether someone your age would have PBP... as it is so rare, especially for a young male (almost unheard of) I would think that if it was that, you would present with much more classic symptoms for it, and you don't. As others have said, what you describe does not fit.

Good luck to you, and try to enjoy the life you have at hand right now, these really are the days you will always remember.
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Old 10-10-2010, 11:13 AM #14 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

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RWG,

There are other conditions, much more likely, that can cause the problems you describe. Have metabolic disorders been explored? Diabetes for example?

Also Myasthenia Gravis, from what I know of it, would fit with the chewing difficulties you talk about.

So, autoimmune, metabolic, and also post viral (had you been sick in the months previous to all of this starting?) are all areas that should be looked at. And NONE of them are necessarily a quick discovery either. Sometimes they are, if the person is experiencing classic textbook symptoms.

Will your doctor refer you to a rheumatologist? I think it would be helpful in moving you forward to getting some answers. And, do what you can to insist on being seen by an ear nose and throat specialist. (even before the rheumatologist) both of those specialties will know whether you need to keep exploring their field of expertise, or be referred on to neurology or an infectious disease specialist.

I understand your concerns with having a small child. The responsibility you feel to be there certainly causes you anxiety over the unknown.

About whether someone your age would have PBP... as it is so rare, especially for a young male (almost unheard of) I would think that if it was that, you would present with much more classic symptoms for it, and you don't. As others have said, what you describe does not fit.

Good luck to you, and try to enjoy the life you have at hand right now, these really are the days you will always remember.
Hi Rose,

Thank you for your post and your info.

I forgot to mention a couple of things, When i wake up in the morning sometimes i have wet on the pillow like saliva or phelgm has come out of my mouth.

Also i do get pain in my mouth quite often and at the back of my mouth and even in my throat.

My mouth just doesn't feel right and neither does my throat, My eyes seem funny and they also hurt sometimes and my face just feels weak or stiff.

I have had bloods done so things like Diabetes have been ruled out.

I'm not sure if my doctor will refer me to anyone it depends what the doctor thinks is causing my symptoms.
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Old 10-10-2010, 03:58 PM #15 (permalink)
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Default Re: Bulbar symptoms? Plus other symptoms

RWG,

Nothing new to add, its all been said. The additional problems you noted to me just now don't have anything to do with MND that I'm aware of.

Rest assured that your doctor really is the best one to decide what specialty to refer you to. He can tell a lot more from being with you in person, than some people on an internet forum are able to.

Good luck to you, I wish you the very best. Give your little one a kiss, and a bedtime story for me, ok?
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