I have questions about some things happening with my body

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Oceanecho

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I want to thank everyone for taking the time to read this.

My questions are:

1) With ALS fasciculations, do they feel like a wave of movement over a muscle, or a small movement, and is it localized to one muscle at a time? Is it ever felt in different muscles? Is it ever felt before muscles stop working?

2) I have read conflicting information about ALS being not sensory at all, and then some researchers saying it can affect sensory. What have you found to be more typical? Are pins and needles a part of it, or is most of the literature talking about that being like a situation when someone is sitting too long in one position, in later stages?

Sometimes I do not know when something was put online, if the info is up to date or outdated info. It feels confusing to navigate at times.

My sibling was very recently diagnosed (limb onset, drop foot, mid fifties). I am really close to my sibling. My sibling is my only family really left outside of my spouse and children, and I am having a very hard time with this.
My sibling has not yet received back the genetic test results specifically for ALS.
Our father passed away from dementia in his late 60's. He was diagnosed mid fifties.
I am mid forties.
Of course I started reading up more about ALS as soon as my sibling was diagnosed. I have been reading research studies and all kinds of things. The more I read, the more scared I feel about the possibility of the FTD-ALS C9 mutation and what that would mean for me and others.
I want to just stop being scared and focus on how to best support my sibling.

I appreciate this forum. I appreciate the FAQ page. I read and re-read it.

I made an appointment to get on anxiety medication and an overall physical. I made an appointment with a neurologist.

Two years ago, someone noticed I had a deformation in my leg, my ankle was leaning in on one side. I felt nothing amiss at all. A while later, it started hurting and so I went to an osteo doctor. The doctor said I had a flat foot deformity where I had no arch support and that causes stress on the ligaments in the ankle and lower leg. That made sense because I was born with flat feet and I have always had weak ankles. I didn't get the inserts and even though I was mostly in the apartment and sedentary, over the year my pain increased, and the stiff feeling in the leg. I broke that ankle a long time ago when it went out one time, so being older I just thought it is showing now, it's me being overweight and all the weight on it without proper support. I just need arch supports, better shoes. I started going out on walks and noticed that made it hurt worse. The calf muscle hurt a lot.

With this diagnosis, I am finding myself extremely paranoid.

I am over here worrying that it is actually one of the calf muscle's failing, that this is like the onset, that my body is trying to tell me and I have just been ignoring the signs, because I just in general ignored anything physical with my body until now.

I am going to get it all checked out.

I started thinking about everything, and I can't help it. I am hoping the anxiety medication will help.

I have always had weak hands with hardly any upper body strength, and I get out of breath easily because I am overweight.

I am worried about my leg and foot thing though on that one side.

I am worried about the stiffness in my arms and hands.

I am worried about the waves of feelings in small areas of my muscles when I am at rest that I cannot see. I have these all over in different muscles and I don't know if that is just from stress now because I am really stressed. I felt these before but I am noticing more now, and I am not sure if that is just because I am not ignoring anything now, or what. They seemed to be more localized before and not as frequent, like they would just go away quickly. Now, they pop up in my arms, my legs, at rest, I am just feeling my body a lot more perhaps.

I have been having a lot of pins and needles sensations, in my hands mostly. In my arms and hands and legs and even my face and back. I started to have a wave of pins and needles in a band across my back when I bend to help my children with their work at their desk. It is not as severe as when a limb falls asleep, but I feel the minor sensation especially in my hands. The feeling radiates out in a band across my back horizontally, I think maybe I have like a disk thing going on with that though, because nothing I have read about ALS, talks about feeling like that.

I am sorry to even be posting this. I just feel really alone right now and scared and sad. I don't know how to feel or what to do. I just want to help my sibling as much as possible and I want this not to be genetic so I can watch my children grow up. I feel so messed up right now in my head.

Thank You for Listening
 

Nikki J

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I am sorry about your sibling. I am glad you are getting checked out and addressing your anxiety so you can be there for them.

I hope your sibling has a negative genetic panel. Even if they do not it doesn’t mean that your symptoms are ALS. I can not tell you how many people get “ symptoms” when their loved one gets ALS - even people with no family history, far younger and or biologically unrelated

all over symptoms are not the way ALS started and pins and needles are as you say sensory issues that if they appear in als are late

you didn’t address the flat feet/ ankle and it got worse. Are you truly surprised? I had ankle onset ( which is unusual) and have glacially slow progression. No pain and it progressed to unmistakeable calf weakness ( failure) in a few months. Still no pain.

good luck with your appointments. Your sibling’s journey is going to be very hard. Consider working with the psychologist long term to support you so you can support your sibling
 

Oceanecho

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Apr 9, 2022
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Loved one DX
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03/2022
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US
Thank You. I definitely want to be there for her. I appreciate this.
 

lgelb

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Nikki gives excellent advice. There is no reason to think of familial ALS or that you are sick that I can see, but this journey with your sister deserves your full attention so I too am glad that you are dealing with your fears.

Best,
Laurie
 
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