Questions on fasiculations and Bipap from ChristineRK

nona

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Mod note: I have moved Christine’s questions from another thread because I felt they merited their own thread.


Question for everyone - as this disease progresses - what has been your experience with the fasiculations (do you get more of them, do they stay the same, or do they stop) and the same question goes for the sharp/exaggerated reflexes. Do those become 'not as exaggerated' or do they stay the
same
Nona said: I have not experienced any lessening of fasiculations, and in fact they show up in new places all the time. Reflexes are the same, the worst of which are in my feet which are now too ticklish for a pedicure.
 
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ChristineRK

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Hi Christine, at five years plus I can still walk, talk and use my hands. I use a powerchair to conserve energy. That is the big thing, energy. I use a bipap at night as well as the afternoon. I also got a g- tube done as I have trouble with pills.
You just have to focus on what you can do and what you are too tired to do can wait. I look at it that I have really bad things coming, but they aren't all happening today. So focus on today. And remember NO WHITE FLAGS!
Hi Vincent!

How did you get your bipap? Did you have to do a sleep study to get one, or did your neuro give you one based upon your symptoms?
Thank you!

~Christine
I have not experienced any lessening of fasiculations, and in fact they show up in new places all the time. Reflexes are the same, the worst of which are in my feet which are now too ticklish for a pedicure.
LOL! Funny you said that - my feet used to not be as sensitive as they are, currently. My friend treated both of us to a pedicure and my feet were jumping around because it was so ticklish! I also experience the new fasiculations in other places. But have you experienced any lessening in places where they were more predominant? (same with reflexes)?

Thank you Vincent and Nona!!
 

nona

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For the first year or so, I only had fasiculations in my arms. Now they are in my legs, abs, neck, sometimes face, but they have not lessened in my arms, even where I thought there was no muscle left.
 

Vincent

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The Bipap was prescribed by the respirologist at the ALS clinic I go to. I only had to do a pulmonary function test and based on a score (FVC) below 50% it was deemed necessary. Sleep studies tend to look more for sleep apnea or low 02 sats.
Vincent
 

ChristineRK

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The Bipap was prescribed by the respirologist at the ALS clinic I go to. I only had to do a pulmonary function test and based on a score (FVC) below 50% it was deemed necessary. Sleep studies tend to look more for sleep apnea or low 02 sats.
Vincent
For the first year or so, I only had fasiculations in my arms. Now they are in my legs, abs, neck, sometimes face, but they have not lessened in my arms, even where I thought there was no muscle left.
Thank you, Nona and Vincent!

Since joining the club, you both have had wonderful patience and empathy.

~Christine
 

ChristineRK

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Hi Christine, at five years plus I can still walk, talk and use my hands. I use a powerchair to conserve energy. That is the big thing, energy. I use a bipap at night as well as the afternoon. I also got a g- tube done as I have trouble with pills.
You just have to focus on what you can do and what you are too tired to do can wait. I look at it that I have really bad things coming, but they aren't all happening today. So focus on today. And remember NO WHITE FLAGS!
Hi Vincent!
That is something I am finding is happening more and more - I am getting very tired, often and fast. What made you decide to get to the power chair? I almost feel like I have 'no right' to use one until I can't walk. But it also makes sense to conserve my energy. What was your turning point?

Thanks, Vincent!
 

ChristineRK

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Hi Vincent!
That is something I am finding is happening more and more - I am getting very tired, often and fast. What made you decide to get to the power chair? I almost feel like I have 'no right' to use one until I can't walk. But it also makes sense to conserve my energy. What was your turning point?

Thanks, Vincent!
Sorry, Vincent - another question. I find that I am getting very 'gunky' in the back of my throat. Not my lungs - but the back of my throat and it almost feels like it is closing up' - not everyday, but more often than usual. Is this a 'normal' thing that can happen with ALS? I'm asking because you are on the Bi-pap.

Thanks again!

~Christine
 

nona

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I'm gunky too. I think it's allergy related and I'm just having more trouble clearing it. I take children's benadryl occasionally and that helps, but then I can't stay awake. Sleeping with some elevation helps at night. I use my bipap at night but not during the day.
 

lgelb

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To evaluate an allergy med that is less sedating than Benadryl (active ingredient is also used as a sleep aid and so it can hamper breathing), try OTC Allegra/fexofenadine, available as a tablet or liquid. You have to take it every day for it to work well, though.
 

blitzc

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Christine,
Trilogy was requested by my neurologist during a Clinic visit. Once I had seen a pulmonologist and had the function test results, we moved forward with the machine. However, I had been asking at each clinic visit about which modifications I needed to start pursuing based upon conversations here.
As for the PWC, I inquired at a clinic visit as my retirement was approaching and insurance would be changing. My neurologist thought it was a great idea to begin the process since it is very long and involved.

More experienced members here have been vocal about PALS getting necessary equipment prior to the need being critical. I would definitely agree with this advice. I only wished we had decided to move sooner than we did. I spent too long in a house that imprisoned me and wore me out.
 

KimT

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My fasciculations started on the bottom of my left foot. Within three months they were in my left calf. Within three more months they were in my right foot and right calf. Now they can be anywhere, including my face, hands, back, etc. They are still present in all prior places. The ones on my face seem to come and go.
 

azgirl

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No more twitching for me. The trade off is paralyzed body. Not a good trade!
 

KarenNWendyn

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No more twitching for me. The trade off is paralyzed body. Not a good trade!
I’ve also noticed no fasciculations in the parts that no longer work. 😳
Agree with Kay
 

Kristina1

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for me both fasiculations and reflexes have become worse over time. I am 2.5 years post-diagnosis. Though I do think fasiculations have lessened in my hands where I have the most severe weakness, but overall my whole body vibrates. Im used to it so it doesn't bother me much. The hyper reflexes do bother me though and they are ridiculously over active even reflexes that you wouldn't think of- like my startle reflex, and my yawn reflex.
 
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