panguinjen
Senior member
- Joined
- Mar 27, 2012
- Messages
- 529
- Reason
- Lost a loved one
- Country
- US
- State
- CA
- City
- Stockton
Anxious,
You have hit a nerve. You asked the following questions in your original post:
"Hope you could answer the following questions
1.) is it likely ALS or BFS?
2.) If twitching is the first sign of ALS, how long before you experience clinical weakness?
3.) How long before I can definitely say that this is BFS and not ALS if my symptoms dont change (wont have clinical weakness)? 2 months? 3 months? or longer?"
People answered you with "go see your doctor" and your reply was that you "would go when there are signs of clinical weakness". At this point all is good. Then you say that you have an "idea" to ask us on a personal level about this disease and any comments would be appreciated.
You have been told that it doesn't sound like ALS and to see a dr, you blow it off (which is your absolute perogative to do), and now you want complete strangers to tell you about a disease that is so debilitating and affects all members of a family. This is not about wasting time, this is about a lack of boundaries. If you have been reading, you have a good idea of what our stories are; you work in the field and do people tell you their most intimate experiences at your first meeting? We support each other because we have worked at these relationships, we try to welcome those facing this difficult path, but we are also aware that sharing comes in bits and pieces. Dr goo gle produces many who panic, focus only on their issues, and want to argue. If you are truly serious and interested, then time will tell and people will share on their terms as it is their story.
Your symptoms took maybe 10 minutes to type, for many here that would take an hour, and you want them to give you their experiences? You are asking for too much from those that have to work very hard to communicate. Others feel differently than I do; and you're right, I didn't have to respond...but I did. Please don't ask questions if you are not prepared for all the answers.
I wish you peace on your journey as you search for answers.
Jen
You have hit a nerve. You asked the following questions in your original post:
"Hope you could answer the following questions
1.) is it likely ALS or BFS?
2.) If twitching is the first sign of ALS, how long before you experience clinical weakness?
3.) How long before I can definitely say that this is BFS and not ALS if my symptoms dont change (wont have clinical weakness)? 2 months? 3 months? or longer?"
People answered you with "go see your doctor" and your reply was that you "would go when there are signs of clinical weakness". At this point all is good. Then you say that you have an "idea" to ask us on a personal level about this disease and any comments would be appreciated.
You have been told that it doesn't sound like ALS and to see a dr, you blow it off (which is your absolute perogative to do), and now you want complete strangers to tell you about a disease that is so debilitating and affects all members of a family. This is not about wasting time, this is about a lack of boundaries. If you have been reading, you have a good idea of what our stories are; you work in the field and do people tell you their most intimate experiences at your first meeting? We support each other because we have worked at these relationships, we try to welcome those facing this difficult path, but we are also aware that sharing comes in bits and pieces. Dr goo gle produces many who panic, focus only on their issues, and want to argue. If you are truly serious and interested, then time will tell and people will share on their terms as it is their story.
Your symptoms took maybe 10 minutes to type, for many here that would take an hour, and you want them to give you their experiences? You are asking for too much from those that have to work very hard to communicate. Others feel differently than I do; and you're right, I didn't have to respond...but I did. Please don't ask questions if you are not prepared for all the answers.
I wish you peace on your journey as you search for answers.
Jen
