- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
I don't mean to take the place of stickies or step on any moderator toes. If they feel this post is unwise, I will understand and respect their choice to delete it.
First, if you are reading this and have not read stickies, I beg of you please to read the stickies first. Truth is, after you really read the stickies if you are here because you fear ALS odds are you will read no further. Good! If you are still here after reading the stickies, please think about a few things before you go any further:
1. It feels like a gabillion people come here afraid they have ALS. Hardly anyone comes back to tell us they have a diagnosis of ALS. I think maybe 2 did in the five months or so I have been posting.
2. About 5400 people will be diagnosed this year in the U.S. with ALS. About 200,000 will be diagnosed with lymphoma. Do you know anyone who has had lymphoma even? Maybe one? That's how rare ALS is. Your odds of dying in a car accident today or tomorrow are higher than that you have or will ever have ALS.
3. The minute you say "I feel" to describe your symptoms, I think "not ALS". One thing that all the diagnosed folks seem to have in common: nothing was "felt". Something just stopped working.
4. Health anxiety is some real stuff. It hurts to be afraid. I know, I have been there. I also know that in the moment of your fear, it can all seem so real. The thing is, it's NOT real. The other thing is, this is the worst place in the world to be reading when you are afraid. There are posts here that will haunt your nightmares. My husband has ALS, and I read here sometimes with caution. For health anxiety, this Forum is a horror show. It is also not a place that anyone has time or patience to help with health anxiety. We are here with and for each other, those with a terminal illness and those who love them.
5. If you have been told by a Doctor it "may be ALS", or if you are in a diagnostic process for possible ALS this is a place to get a lot of good information and advice. There is a wealth of information here and we are here for you. Please remember that even in this situation, it is typically not ALS.
I hope this helps and if the mods think it does not help please hit that delete button, no apologies needed.
First, if you are reading this and have not read stickies, I beg of you please to read the stickies first. Truth is, after you really read the stickies if you are here because you fear ALS odds are you will read no further. Good! If you are still here after reading the stickies, please think about a few things before you go any further:
1. It feels like a gabillion people come here afraid they have ALS. Hardly anyone comes back to tell us they have a diagnosis of ALS. I think maybe 2 did in the five months or so I have been posting.
2. About 5400 people will be diagnosed this year in the U.S. with ALS. About 200,000 will be diagnosed with lymphoma. Do you know anyone who has had lymphoma even? Maybe one? That's how rare ALS is. Your odds of dying in a car accident today or tomorrow are higher than that you have or will ever have ALS.
3. The minute you say "I feel" to describe your symptoms, I think "not ALS". One thing that all the diagnosed folks seem to have in common: nothing was "felt". Something just stopped working.
4. Health anxiety is some real stuff. It hurts to be afraid. I know, I have been there. I also know that in the moment of your fear, it can all seem so real. The thing is, it's NOT real. The other thing is, this is the worst place in the world to be reading when you are afraid. There are posts here that will haunt your nightmares. My husband has ALS, and I read here sometimes with caution. For health anxiety, this Forum is a horror show. It is also not a place that anyone has time or patience to help with health anxiety. We are here with and for each other, those with a terminal illness and those who love them.
5. If you have been told by a Doctor it "may be ALS", or if you are in a diagnostic process for possible ALS this is a place to get a lot of good information and advice. There is a wealth of information here and we are here for you. Please remember that even in this situation, it is typically not ALS.
I hope this helps and if the mods think it does not help please hit that delete button, no apologies needed.
