Acts238
New member
- Joined
- Jan 12, 2017
- Messages
- 2
- Reason
- Lost a loved one
- Country
- US
- State
- Utah
- City
- Brigham City
1. This is my first post and no, I do not have ALS. I am going to ask a VALID question regarding a close friend of mine who passed away 3 months ago from ALS. Regarding myself, I have advanced diabetes and a history of colon cancer, but other than this, I am fortunate and lucky enough to be healthy. I am an ALS donor and strive and pray for a cure every night.
2. Now for my question. One of my former college classmates who remained a friend until her death passed away from SALS 3 months ago. I am curious about her onset because.........after reading the primary post about "Do I have ALS" which clearly laid out how ALS mostly onsets and why so many people worry about nothing over something simple like a twitch. That post was extremely informative, but I simply DO TAKE ISSUE with one part of it. The post said that for ALS, it's not a matter of having difficulty doing something, but you simply can't do something. Again-I agree. I witnessed this with my friend, but...........My friend absolutely DID NOT start out waking up one day at one given moment in time without the ability to raise her right arm. There was point A......which was.......she had cramping and complained that her right shoulder "felt weaker". She could raise her right arm fine. After a month, it was a little tougher to do, but she could easily do it. After 2-3 months, a little tougher to raise it, but she could do it. It was not until roughly 4-5 months from symptom onset that she did wake up one day, and that was it.....she could not raise her arm-shoulder up. But....... it was PROGRESSIVELY difficult for her to raise her right arm. It become harder and harder and then yes.......one given day.....at one given moment in time, she simply could not raise her arm.<does anyone see the difference in the scenario she had, and what the main poster wrote about ALS onset regarding the post basically instructing folks to stop worrying about meaningless stuff.
3. Again, I agree with the primary poster only based on what I have witnessed with my friend and read regarding ALS, but I am telling you this......she absolutely DID NOT wake up one day, and boom.......lose function of her limb without the ability to raise it at all. Yes, that EVENTUALLY happened after about 5 months, but from point A-first day or month of symptoms until that 5 month point, she in fact, COULD raise her arm above her head. It became progressively worse.
4. So, this gets me to the question regarding the following........how common is it in ALS to suddently lose function (absolutely the limb or finger or foot or hand, etc simply does not work literally......waking up one day and it doesn't work compared to the day before when it did work? The primary main poster kind of wrote his or her post leading one to think that with ALS, it actually does have all of a sudden regarding loss of function. I am certainly not saying this is false because I am no expert on anything, much less ALS, but I am telling you from what I witnessed with my friend who lives 3 doors down from me for 30 years....
A. One one given day, she complained of cramping in her shoulder/upper arm with PERCEIVED WEAKNESS. Meaning.....SHE SAID her arm felt weak, but she could certainly raise it over her head until about 5 months and during this time from point A until the 5 month mark, she would say it's getting tougher to do and it feels much more tired when she does so. Then, about 5 months into it, she awakened one morning and could not move her shoulder/upper arm at all.
B. Regarding her EMG testing, I have no idea if they did those when she went to the doctor about 4 months into it, but I know this, she went to the ER on that day at about 5 months when she couldn't move her upper arm and they admitted her and she was soon diagnosed. I imagine she certainly had CLINICAL-TRUE weakness from her very first complaints of cramping and it becoming more difficult to raise her arm, but I am telling you........she could do it. It became progressively worse, but did not start out with no symptoms at all, at then boom, she awakens one day and can't move her upper arm.
See what I am getting at?
Conclusion: My question based on all of the above and sorry for the redundancy, but my question is.......how common is it actually or how fast is it from no symptoms at all until.......no use of the affected area at all-true clinical weakness? Is it a day, a week, a month, 6 months, 3 years? Etc? This is why I posted and just wanted to give the story of my classmate and friend and I am certainly not attempting to scare anyone. I am just interested in what is common or more common while knowing ALS is very broad and the symptoms are so much different for so many people.
2. Now for my question. One of my former college classmates who remained a friend until her death passed away from SALS 3 months ago. I am curious about her onset because.........after reading the primary post about "Do I have ALS" which clearly laid out how ALS mostly onsets and why so many people worry about nothing over something simple like a twitch. That post was extremely informative, but I simply DO TAKE ISSUE with one part of it. The post said that for ALS, it's not a matter of having difficulty doing something, but you simply can't do something. Again-I agree. I witnessed this with my friend, but...........My friend absolutely DID NOT start out waking up one day at one given moment in time without the ability to raise her right arm. There was point A......which was.......she had cramping and complained that her right shoulder "felt weaker". She could raise her right arm fine. After a month, it was a little tougher to do, but she could easily do it. After 2-3 months, a little tougher to raise it, but she could do it. It was not until roughly 4-5 months from symptom onset that she did wake up one day, and that was it.....she could not raise her arm-shoulder up. But....... it was PROGRESSIVELY difficult for her to raise her right arm. It become harder and harder and then yes.......one given day.....at one given moment in time, she simply could not raise her arm.<does anyone see the difference in the scenario she had, and what the main poster wrote about ALS onset regarding the post basically instructing folks to stop worrying about meaningless stuff.
3. Again, I agree with the primary poster only based on what I have witnessed with my friend and read regarding ALS, but I am telling you this......she absolutely DID NOT wake up one day, and boom.......lose function of her limb without the ability to raise it at all. Yes, that EVENTUALLY happened after about 5 months, but from point A-first day or month of symptoms until that 5 month point, she in fact, COULD raise her arm above her head. It became progressively worse.
4. So, this gets me to the question regarding the following........how common is it in ALS to suddently lose function (absolutely the limb or finger or foot or hand, etc simply does not work literally......waking up one day and it doesn't work compared to the day before when it did work? The primary main poster kind of wrote his or her post leading one to think that with ALS, it actually does have all of a sudden regarding loss of function. I am certainly not saying this is false because I am no expert on anything, much less ALS, but I am telling you from what I witnessed with my friend who lives 3 doors down from me for 30 years....
A. One one given day, she complained of cramping in her shoulder/upper arm with PERCEIVED WEAKNESS. Meaning.....SHE SAID her arm felt weak, but she could certainly raise it over her head until about 5 months and during this time from point A until the 5 month mark, she would say it's getting tougher to do and it feels much more tired when she does so. Then, about 5 months into it, she awakened one morning and could not move her shoulder/upper arm at all.
B. Regarding her EMG testing, I have no idea if they did those when she went to the doctor about 4 months into it, but I know this, she went to the ER on that day at about 5 months when she couldn't move her upper arm and they admitted her and she was soon diagnosed. I imagine she certainly had CLINICAL-TRUE weakness from her very first complaints of cramping and it becoming more difficult to raise her arm, but I am telling you........she could do it. It became progressively worse, but did not start out with no symptoms at all, at then boom, she awakens one day and can't move her upper arm.
See what I am getting at?
Conclusion: My question based on all of the above and sorry for the redundancy, but my question is.......how common is it actually or how fast is it from no symptoms at all until.......no use of the affected area at all-true clinical weakness? Is it a day, a week, a month, 6 months, 3 years? Etc? This is why I posted and just wanted to give the story of my classmate and friend and I am certainly not attempting to scare anyone. I am just interested in what is common or more common while knowing ALS is very broad and the symptoms are so much different for so many people.