A little shocked.

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Momofboys

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Learn about ALS
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Grand rapids
I am not sure if I should share my concern. I do not want to diminish the struggles people with ALS experiences. But I want to share my thoughts with someone. I apologize in advance as I am not as well spoken as most people here.

I am currently awaiting an EMG and a NCS. Thinking something could be wrong feels foreign to me.
My pcp suggested I see an ENT and neurologist. Due to muscle cramps, caused by certain movements and positions for several years. (Tried PT with no improvement)

Starting this winter I began having muscle twitching in my right foot, which is now constant. She pointed out my foot twitches non stop when I sit and it dangles. I hadn’t noticed.

While speaking with my doc she asked a lot of questions. She pointed out some issues I’ve experienced
could be related. I have experienced random knee buckling, constant twitching in my leg, occasionally twitching in my tongue and jaw. Sometimes my hand jerks or let’s go of things at random, I also have choked on my own saliva at random. I have zero pain or tingling.

I was tested for vitamin deficiencies, thyroid problems, electrolyte imbalance, and general blood work. Everything looked fine. At that point my doc suggested the issue maybe neurological. She said it was beyond her experience. All that came to her mind was ALS and MS.

I am not panicking as she is a PCP and this seems beyond her. But it seems clear there is a very real problem.

Saw the ENT and who performed a scope, found nothing out of the norm. ENT also suggested I see neurologist.

Does this sound familiar? I figured so many people have posted concerns on this forum you guys have seen everything.

FYI I refuse to go down a google black hole. I thought perhaps a knowledgeable forum would help me understand the road that may lay ahead.

Thanks for reading this.
 
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Hi, Mom, you write as well as anyone here!

Did the neurologist who ordered the EMG/NCS see you beforehand? If so, what did s/he say?

As you know, if you've had cramps for several years, that is unlikely to relate to ALS. But let's say that's separate or you have something that develops more slowly. In either case, you sound like you're on the right diagnostic path.

As for the road ahead, as you will have read here, many of us experience some of the things you describe. They can relate to everything from lack of sleep to electrolyte imbalance (that doesn't always show up on blood work) to not getting enough stretching in. In short, they can mean something or nothing. In this case, I wouldn't try to guess where you fall, but agree that Google's nooks and crannies are no place for you right now.

In re the foot cramps, I've had those since I was a child. I know some of the things that provoke them and I try not to do those things. But sometimes they come out of nowhere and likely they always will.

When are you being tested and where?

Anyway, like we always say, enjoy your family, live life at max till you can't and try not to worry. We'll support you however we can.

Best,
Laurie
 
Thank your for taking the time to respond. And for sharing about your foot cramps. I find it so uncomfortable when I can’t straighten my toes!

I am going to a local neurologist office in the beginning of June. I have not seen anyone from that office. Based of the findings of my PCP and ENT the doc ordered the EMG and NCS, to take place at my first appointment. Is ordering the emg and NCS first thing not a good path?
 
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It works just as well, no worries.
 
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