Dad has ALS. Now suddenly extreme fatigue.

[krishnan]

My dad was diagnosed with ALS early last month. I think the symptoms started 1 - 1.5 years ago, but only recently our neuro managed to do the correct diagnosis.
Last 5 days he is having extreme fatigue. Suddenly he is so weak that he needs help in every aspects. His doctor is saying it is all related to ALS. But, I am having doubts. Please check the progression I recorded below and let me know your thoughts.

Jan/Feb 2016 - Sensory issues on right hand finger - Very active
July 2016 - Right shoulder partially affected with slight issues in speech. Still very active.
Dec 2016 - Right shoulder totally affected. Sensory issues on left hand. More noticeable speech issues . Still very active with full energy.
25 March 2017 - Left shoulder muscles also affected. Swallowing issues and more speech issues. Still very active, didn’t notice a big difference in his energy level.
20 April 2017 – Started with slight tiredness and now extreme fatigue. No major changes in the symptoms other than slight change in swallowing capability. He is pretty much sleeping all day and night now.

I know fatigue is part of the disease, but I am struggling to understand why this is happening so rapidly (10 days ago he was perfectly fine and energetic).
Please let me know if this is a common thing?

 

[Nikki J]

Did the doctor check some blood work, breathing capacity, urine? Maybe it is progression but he is not immune to infection, anemia etc.

If it is ALS I would be concerned about his respiratory status. When breathing becomes a struggle it is exhausting

 

[KimT]

I agree with Nikki. I would check breathing first. If that hasn't declined, they maybe it's something other than ALS causing this sudden fatigue.

 

[krishnan]

Thanks Nikki/Kim

No issues with breathing.

Did some blood tests. Sodium level is showing bit low. Looks like that's the problem.

 

[Dave K]

Your father can always get a second medical opinion if he suspects he may also have another condition that requires treatment. But to answer your question, fatigue is very common in ALS, and rapid onset of a new symptom is also common. Because symptoms can appear rapidly and may need medical attention, all of these observations should be reported to the doctor as part of an ongoing practice of good communication with the medical team.

 

[soonerwife]

How is your dad's eating? My PALS had no energy when he wasn't getting enough nutrition.

 

[affected]

SO many things that can impact this.

If your dad did a bit too much then had a big fatigue and didn't eat super huge calories over that time he may have hit a 'tipping point'.

You said his breathing is fine - when was his last breathing test done? Is he on bipap? You reported swallowing issues in March - so what is his calorie intake like? How long does it take him to eat a meal?

Taking a long time to eat consumes huge amounts of calories.
Breathing problems consume huge amounts of calories.

When this is happening, small routine tasks can cause huge fatigue.

My Chris found that once it took him more than 15 minutes to dress himself of a morning, that chore alone wiped him out and it would take him up to 2 hours to recover and that was first thing in the morning! When I started dressing him, he was stunned I could dress him fully in less than 2 minutes without rushing (he could still walk and move his arms a reasonable amount). But then he could simply be dressed, come down and eat, then enjoy his morning and then need a rest.

Hope these replies help you to figure out some strategies.

 

[Nikki J]

Hyponatremia ( low blood sodium) may indeed be the problem depending on what a " little low" is. I had it once and felt truly awful

Hoping he is on the way to better. Are they treating with fluid restriction or more aggressive measures?

 

[krishnan]

Hyponatremia ( low blood sodium) may indeed be the problem depending on what a " little low" is. I had it once and felt truly awful

Hoping he is on the way to better. Are they treating with fluid restriction or more aggressive measures?

He is back at hospital now. There are giving him Sodium chloride IV drip. Being weak and no appetite, he is taking very little food. I know, unless that is sorted, it is not easy to go back to some sort of normalcy.