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Nikki J

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Please stick to one thread. Mike that is a strict rule on DIHALS. It is much too hard to go from thread to thread for PALS and multiple threads by DIHALS are deleted without notice as it says in the sticky People will answer here if they choose. The jaw sensation is a common complaint of DIHALS and also on the bfs board I know
 
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gooseberry

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The jaw issues could be caused by tmj, clenching with muscle spasming etc all due to stress. Pain, weakness, slurrring, difficulty with jaw alignment are all signs. He needs anxiety treatment.
 

storch

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I just don't understand how all the sudden I'm unable to speak quickly & clearly and am slipping up on words. It's hard for me to hold a conversation as it feels I have to literally try hard to get my tongue & mouth to coordinate. They just feel weak and stiff, it's getting increasingly hard to articulate things.

Once again, is anyone knowledgable enough on this that may be able to tell me anything more? I can't get into another doctor for months and it's getting pretty scary. It almost as if my lips and tongue are getting in the way of me speaking if that makes sense? Someone please help. At 24, How low exactly are the odds of ALS? I know it doesn't matter... either you have it or you don't. I'd like to overcome fear of this symptom or understand what the hell is going on and why my jaw tongue lips feel fatigued and slow / weak?
 

storch

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It's as if I have to stretch my tongue and mouth to say certain words...
 

GregK

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> either you have it [als] or you don't.

No. It's not that easy. It takes a truckload of tests and, sadly, often years to diagnose als.

But you've been told by a Neurologist and two of our members that you do not have als.
In spite of that you're still beating this dead horse. Move on.

Your best bet at this time would be to get help for your anxiety.
Get that under control and only then reevaluate your 'symptoms'. There's a good chance many will be gone.
 

storch

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> either you have it [als] or you don't.

No. It's not that easy. It takes a truckload of tests and, sadly, often years to diagnose als.

But you've been told by a Neurologist and two of our members that you do not have als.
In spite of that you're still beating this dead horse. Move on.

Your best bet at this time would be to get help for your anxiety.
Get that under control and only then reevaluate your 'symptoms'. There's a good chance many will be gone.

A neurologist that ran zero tests, asked me if I remember my dreams at night, and told me it could be narcolepsy and to try gabapentin. When I said he ran no tests, he didn't look at my muscles, reflexes, blood test, emg, anything. I spent 10 minutes with someone I waited 3 months to get in with, who ignored every single symptom I was having except the fatigue.

I apologize if I'm frustrated and looking for answers and advice while waiting to see a real doctor again. If anyone knowledgeable of bulbar symptoms is able to comment on this and tell me if they sound similar or rather, NOT like ALS and why, I'd feel much more relaxed. I apologize if I offended you, but I do feel the need to at least address this before leaving this forum. If this isn't what the "is this ALS?" section was for, then I guess I made a mistake. That symptom specifically is what I'm asking about, and an explanation as to why it does / doesn't sound like ALS. I won't ask again, but really would appreciate a thoughtful answer.
 

gooseberry

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Storch, here's the thing. People with als often are struggling to type with one hand, one finger, or with their eyes. Cals are tired, working , and taking care of their pals with love and deep respect. We have tried to be kind but you are asking people who are I'll and tired to keep responding to your selfish questions. Understand what it is you are asking people to do! If you had read the stickies you would know your symptoms don't match als. Please, go to a new doctor but stop asking us, we have told you not als!
 

Atsugi

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Trust doctors and also get second opinions. Neurologists are super-trained to recognize problems.

There can be a lot of explanations for your speech problems. But I would put ALS out of your mind.

My wife was a doctor for 20 years. She would go into the waiting room personally and call the name of the patient, then watch how they responded, got up and walked to the exam room. Often, she had them completely diagnosed before they even got to the door. She could look across a restaurant and tell you which persons had genetic abnormalities. Believe me, doctors are generally really smart. If they don't see the need to do tests, it's because there's no need to do tests.

If you don't trust your neuro, see another one.
 

storch

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Storch, here's the thing. People with als often are struggling to type with one hand, one finger, or with their eyes. Cals are tired, working , and taking care of their pals with love and deep respect. We have tried to be kind but you are asking people who are I'll and tired to keep responding to your selfish questions. Understand what it is you are asking people to do! If you had read the stickies you would know your symptoms don't match als. Please, go to a new doctor but stop asking us, we have told you not als!

I'm not asking YOU. In fact everyone else here has seemed extremely helpful and kind. I also don't feel my questions have been selfish in any way, but the condescending way in which you are speaking to me and your lack of respect is quite infuriating. Don't you dare insinuate that because I'm simply asking questions about symptoms, that I suddenly am putting myself before the suffering of others that actually have ALS, have you even read my posts? What an ignorant and sick thing to say. You don't know the "love and deep respect and care" I will provide those suffering around me with every single day.

I came here, to the "do I have als?" forum to ask if I could have ALS and to clarify some symptoms with people who might have more knowledge than I do, nothing more. I am not forcing anyone to do anything, nor have I asked the same question twice. I was inquiring about the possible bulbar symptoms as another member told me to reach out to those that may know more about them, so I did.
 

storch

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Trust doctors and also get second opinions. Neurologists are super-trained to recognize problems.

There can be a lot of explanations for your speech problems. But I would put ALS out of your mind.

My wife was a doctor for 20 years. She would go into the waiting room personally and call the name of the patient, then watch how they responded, got up and walked to the exam room. Often, she had them completely diagnosed before they even got to the door. She could look across a restaurant and tell you which persons had genetic abnormalities. Believe me, doctors are generally really smart. If they don't see the need to do tests, it's because there's no need to do tests.

If you don't trust your neuro, see another one.


You're right. This nuero just specialized in sleep disorders and basically flat out told me he didn't know much about ALS. I am just so frustrated as I've waited so long to see him and without insurance, payed about $300 for a 10 minute visit. I am already struggling to make it through even one day with everything else thats happened.

I am scheduled with another one, but it's 4 months out. I will try and put this out of my mind. I am extremely grateful for your advice, however. I'm sorry if I've made you go out of your way to respond to these questions. The nature of my disorder I guess. I know it's true what you said about stress, and clearly with your experiences you understand. Thanks again.
 

storch

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Storch, here's the thing. People with als often are struggling to type with one hand, one finger, or with their eyes. Cals are tired, working , and taking care of their pals with love and deep respect. We have tried to be kind but you are asking people who are I'll and tired to keep responding to your selfish questions. Understand what it is you are asking people to do! If you had read the stickies you would know your symptoms don't match als. Please, go to a new doctor but stop asking us, we have told you not als!

I'm honestly sorry if I come across as an anxious moron or careless in any way. I do appreciate the help the members provided me, and am not belittling your suffering or the strength you have caring for whoever you are helping. I respect you and am deeply sorry for your struggles.

I am on a thin line of wanting to end my life and have been for months, these symptoms are hard for me with everything else I'm dealing with. I wish you didn't have to suffer and am horrified and sad for all those affected with this. I won't keep asking for clarification of the symptoms, I didn't plan on it and didn't want to be selfish. I just wanted to more information.

Thank you, and I'm so sorry for what you are going through.
 

ECpara

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Storch, you asked what are the odds of someone 24 having ALS. It is described in the stickies, but in a nutshell.......for someone 30 the odds are 1 in 1,000,000. Now multiply that by 5 because only 20% of PALS have bulbar onset, so we're at 1 in 5,000,000. And the further (younger) you are from 30, even less a chance. I would say your chances are infinitesimal.

My husband has bulbar onset ALS, has for over 3 years now. In the beginning he didn't notice a thing. He was slurring his speech, but it was everyone else who noticed, not him. Do your friends notice you slurring, without you asking them? His jaw was never a problem, still isn't (even though he hasn't spoken or eaten in over two years). It starts out as strictly a tongue problem.

I hope you get to the bottom of your anxiety and depression. You clearly don't have ALS in my opinion (or others on this forum). Please seek professional help so you can enjoy life. Good luck to you!
 

Atsugi

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Storch, I'm 60 so excuse me if I sound like I'm lecturing a young 'un. I'm not lecturing. I'm just offering advice because I think suicide is not a good solution for you.

Don't get me wrong. Suicide is acceptable to me in certain circumstances. For a person in incurable pain or someone having a torturing terminal disease like ALS, I will advocate for and even assist a person to manage their death. You make your own decisions.

But frankly, I'm absolutely sure, from what you've said and from what I know of life, that you can indeed be quite happy for the remaining 60-70 years of your life. Don't eff it up now. Get professional help. If you find yourself planning a suicide event, go to the ER. You're just not that far away from happiness.
 

storch

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Storch, you asked what are the odds of someone 24 having ALS. It is described in the stickies, but in a nutshell.......for someone 30 the odds are 1 in 1,000,000. Now multiply that by 5 because only 20% of PALS have bulbar onset, so we're at 1 in 5,000,000. And the further (younger) you are from 30, even less a chance. I would say your chances are infinitesimal.

My husband has bulbar onset ALS, has for over 3 years now. In the beginning he didn't notice a thing. He was slurring his speech, but it was everyone else who noticed, not him. Do your friends notice you slurring, without you asking them? His jaw was never a problem, still isn't (even though he hasn't spoken or eaten in over two years). It starts out as strictly a tongue problem.

I hope you get to the bottom of your anxiety and depression. You clearly don't have ALS in my opinion (or others on this forum). Please seek professional help so you can enjoy life. Good luck to you!

That is reassuring and very helpful. Thank you for your insight. I'm sorry for what you and your husband are going through. I wish my mind wasn't such a worthless mess, it's very miserable. Good luck to you as well!

I honestly can't imagine how strong all of you, and those you are caring for are. What an awful, awful disease, it makes me feel sick inside and I wish I could help in some way more than just donating alone. I do hope all those who have posted are right and it's not ALS. If I do or ever were to have it, I don't think I'd handle it as well as any of you.

Thanks again.
 

storch

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Storch, I'm 60 so excuse me if I sound like I'm lecturing a young 'un. I'm not lecturing. I'm just offering advice because I think suicide is not a good solution for you.

Don't get me wrong. Suicide is acceptable to me in certain circumstances. For a person in incurable pain or someone having a torturing terminal disease like ALS, I will advocate for and even assist a person to manage their death. You make your own decisions.

But frankly, I'm absolutely sure, from what you've said and from what I know of life, that you can indeed be quite happy for the remaining 60-70 years of your life. Don't eff it up now. Get professional help. If you find yourself planning a suicide event, go to the ER. You're just not that far away from happiness.

No, I don't take it as lecturing at all, thank you. While I do almost instinctively think about ending my life to escape every day, I have people that need my support more than I need to enjoy a happy life, which is enough to keep me here for them. And like you said, in my situation at least I can still continue to hope, even if it seems like it keeps getting worse.

I want that to be true, and I want to be happy. I am so miserable right now and the professional help I've sought out hasn't helped. Thank you again, I appreciate your caring attitude towards someone you don't even know.
 
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