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hopingforcure

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It seem's that we spend so much of our time on this forum questioning the twitching weakness, atrophy question:
It is this simple TWITCHING on it's own is meaningless.......................................................
I feel like for MOST people that have a MND or something Malignant, the twitching will be a symptom that goes along with other things, you will feel different, anotherward, you will have stiffness, weakness, spasicity, clonus, startle reflex, super-hyper reflexes, jaw jerk, atrophy, emotional liability, slurred speech, swallowing problems.........................
You will NOT have minor little tiny tiny things, and if you do and still have ALS, well then you are going to be a super duper slow progressor. A doc will find issue's with your neuro exam, something, or you will have problems that are undeniable...
I feel like I have to put this out here again.. We are patients, loved ones, friends, we are not the ALS specialist.. We can help you, we can encourage you, we can guide you, but we can not decide what you are going to do.. Most of you luckily will come to the forum with questions, and in a short time we will not hear from you again, and you will NOT have ALS.. and if you are one of the few who end up with the disease, or end up with UNDX Progressive symptoms, or want to stay with us and be part of our family then welcome and we are glad you stay, but if you are going to be a person who just keep's on a course with unwarranted questions, be patient, for we have answered these same question's a million times before...
 
Love the title of the thread!
Well said Hoping!
Rick&Joan
 
Maybe that Do I Have ALS? section should come with a disclaimer:

"Please be advised that the people you are about to ask this question are in no way qualified to answer it and can offer only medically unreliable opinions, anecdotes, and speculation AND the confidence with which any member presents information or advice is no measure of that individual's knowledge or credibility."
 
I’m probably going to get black balled from the forum or verbally abused for expressing my opinion…but here I go!

If people have managed to find this forum and post a question about their condition, they are obviously concerned about their wellbeing. I find it amusing how either people with ALS or friends, family, etc. of people with ALS can lambaste someone on this forum for asking a genuine question. You can’t always expect a person who is worried about their own wellbeing to take YOUR feelings into account before posting a question – we are all imperfect. My advice: if you’re tired of reading and responding to questions you feel are asinine and are posted on the “Do I Have ALS? Is This ALS?” section on this forum, DON”T RESPOND! It’s that simple! Do everyone one a favor, stay away from this section of the forum because your negative energy brings nothing positive.

Someone once said, “Good health is simply the slowest way a human being can die.” We will all end up passing at some point. Let’s live with compassion and respect until we do.
 
MangiPNG
It is easy to say "DON”T RESPOND! It’s that simple! Do everyone one a favor, stay away from this section of the forum because your negative energy brings nothing positive." but you know what? There are some people who do need our help and then there are others who don't. If all of us who actually KNOW something stay away from that section of the forum then there would be no real, accurate information there at all. So it would be the blind leading the blind or the cyberchondriacs feeding off of each other. And because of that the whole forum would be diminished.

And if you find it amusing that we get annoyed then I don't think much about your sense of humour. Of course we don't expect people to care about anyone else but themselves. After all we're all here for only our own benefit and to hell with anyone else's feelings!

Ok, that aside, stay around and get to know us before you crap on us. We are good people who do truly want to help everyone. And don't take this as verbal abuse because I don't mean it to be.
 
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I’m probably going to get black balled from the forum or verbally abused for expressing my opinion…but here I go!

First lesson in how to lose friends and how not to influence people -- claim to be a victim in a room full of people worse off than you.

If people have managed to find this forum and post a question about their condition, they are obviously concerned about their wellbeing. I find it amusing how either people with ALS or friends, family, etc. of people with ALS can lambaste someone on this forum for asking a genuine question. You can’t always expect a person who is worried about their own wellbeing to take YOUR feelings into account before posting a question – we are all imperfect. My advice: if you’re tired of reading and responding to questions you feel are asinine and are posted on the “Do I Have ALS? Is This ALS?” section on this forum, DON”T RESPOND! It’s that simple! Do everyone one a favor, stay away from this section of the forum because your negative energy brings nothing positive.

If you do not have ALS as a specific diagnosis or a possible diagnosis from a qualified physician, why come here in the first place? And why expect people who do have the diagnosis and suffer the effects of the disease on a daily basis to have the least bit of sympathy for obvious hypochondriacs? Turn your statement on its head and apply it to yourself. If it bothers you to see mentally disturbed people being told to seek medical attention for their disturbance, even in a polite way, then don't read this forum. Their negative energy and egocentric need to be the center of attention shows a complete lack of compassion and respect for people who need to spend the limited and dwindling energy that they do have enjoying what they still can do in life.

Those people you are so concerned about have plenty of other places where they can ask their "genuine" questions. Not receiving an answer here is not going to be a matter of life and death for the overwhelming majority of them either. Your advice to us has been noted and found wanting -- you should reconsider it.

Someone once said, “Good health is simply the slowest way a human being can die.” We will all end up passing at some point. Let’s live with compassion and respect until we do.

We are living with respect and compassion. Expecting us to tolerate those who abuse that respect and compassion is a bit presumptuous, don't you think? If you aren't happy with the way those people are treated here, feel free to start your own forum on your own dime and invite them all to join you.
 
MangiPNG -

You came here after you had a complete neurological exam and were told you didn't have ALS. You were treated compassionately and respectfully by every member who responded to your posts.

I've never heard of anyone being blackballed on this forum but I'm not sure how much more good will you should expect after that slap in the face. Consideration of other's feelings actually is an expectation in support groups.
 
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