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Acts238

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Lost a loved one
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Utah
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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.
 
I have no idea if anyone has that data. I've never seen it.

The usual case is that my wife would wake up in the morning and be surprised that something didn't work.
 
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I am very sorry for the loss of your friend. Her onset sounds slower than most.

For my husband, he pretty much just tripped on stairs one day due to his drop foot. He had no idea it was from drop foot because he could not feel the drop foot at all he just fell, thinking it had happened from carrying a load up steps. He said in retrospect, he had other incidents of tripping that were less dramatic. He just thought he was tired and working hard. In fact the foot was failing, and he was NOT feeling it.

My friend's husband woke up one day, literally unable to raise his arms above his shoulders. Bi-lateral onset it very rare. They first thought he had a stroke.

Unusual presentation do happen, absolutely. It's just that the odds that a DIHALS poster will have a super unusual presentation are very slim indeed.
 
Hi
My personal experience is not that a whole limb fails at once just that a particular muscle goes, and yes it has been that it worked one day and not the next. This doesn't mean that I couldn't raise my arm from one day to the next I just lost part of a movement. My good arm is on it's way out now, if I raise my arm in front of my body I can do it but if I try to raise my arm out to the side I can't. There are lots of muscles in our bodies if we are losing them little by little the others have to work harder hence cramping and fatigue, the cramping and fatigue came after loss of function not before.

My first problems were that I was falling over due to not noticing I had foot drop, this seems to be very common. So yes it got harder to do things because our bodies are very good at adapting and using different muscles to compensate. But at no time did I feel weak, I felt normal but the movement I was trying to make just didn't happen or if it did it happened in a different way that threw me off balance. Each movement we make is controlled by several muscles not just one so it makes sense that a movement could be limited for a while depending on how many of the muscles that enable that movement are lost.

My own personal opinion is how we experience or perceive the effects of this illness depends on our rate of progression and how it spreads around our bodies. The stickies highlight the things that are clear and classic signs, they also show clearly the things that are not individually signs of als because they could be caused by so many other things. Identifying perceived or clinical weakness really is a job best left to the neuro the specialist which is why when we get anxious people question the stickies we try to reassure rather than increase the worry and encourage them to get an expert opinion with doctors.

I am not sure if I have put this across very well, it is such a difficult thing to explain as sitting here in my hospital bed I feel exactly the same as I did before this all started, I only realise my limitations my disability when I try to do something and can't.

Wendy
 
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There is no set answer to your question, Acts, as it will rest on the overall progression rate, which is non-linear anyway owing to the loss of motor neurons reaching a critical mass, with corresponding loss of control of the muscle involved.

I'm sorry for your loss of your friend.

Best,
Laurie
 
Folks, thanks for the above responses and I feel that I understand better now based on your responses. In reading your above comments, I am getting the jest that is not necessarily about 1 whole body part, but perhaps one muscle or one muscle group and that would exactly explain what happened to my friend. Meaning......she had likely and suddenly lost function of one muscle in her upper arm or shoulder, but was able to still lift it over a few months because she of course had other muscles in the shoulder/upper arm region to compensate, but after the critical threshold was reached where enough of the muscles died, she couldn't lift her shoulder at all. I understand and I do thank you for your responses. It's incredible that I do understand because I am not the sharpest tool in the shed, so that means you folks laid it out easily to understand. I wish all the best to you and your family members. In the mean time, I'm going to keep on donating and praying. If I were a scientist, I would keep on researching and studying my butt off, but that I am not. Still, I am going to continue to help the best I can. I want this earth rid of this disease. Period! It shouldn't be here!
 
I do agree that the sticky is misleading. My husband didn't just wake up one day unable to do something he could before. There's been progressive weakness over months. It's getting more and more difficult to do things...he's feeling weaker and weaker. And yes, it's a "feeling" with him, so that confused me too. I am sorry, I don't mean to disrespect anyone but I was comforted by the sticky in the beginning because my husband did not present that way. However, it turns out he has ALS anyway. So everyone is different.
 
At the risk of driving some poor DIHALS nuts, I think the rider we must place on many generalizations about this disease is that ALL neurological conditions, and most particularly ALS are fairly poorly understood at this point. They have a variety of presentations for sure. I think there ARE a few hard and fast rules. Ones that come to mind are:

1. Clean EMG, extremely rare to eventually be Dx'd as ALS. Yes even Bulbar cases.

2. No clinical weakness, breathing or speaking/eating issues, no ALS.

3. TINGLING in extremities points a long way away from ALS as part of presenting symptoms.

While I say the minute I read "feel" a few times in a post I think "nope, not ALS" there are always rare exceptions. Dwelling on exceptions though is a little like pointing to that guy at work who had a cough for a couple of weeks and died two months later from stage 4 cancer. COULD it happen to you? Yes. Will it? Very, very unlikely.

Lenore
 
I would say "If you have met one person with ALS, you have only met one person!" There are extremely general thoughts on progression and onset. No 2 people are alike in presentation or progression. This is partly why this is a disease of exclusion.
 
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