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bp1234

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Hello! Thank you for allowing me to post this on this forum. I really appreciate any insight!
About a year ago, I was diagnosed with a gluten sensitivity, hiatal hernia, and too much stomach acid. I was placed on a medication and a gluten-free diet. After a few weeks, I noticed some twitching when lying in bed. After looking up side effects from the new medication and seeing it could cause twitching, I spoke with my doctor and stopped the meds. He said if it was due to the meds, it would go away in a few weeks. It never did, but I didn’t think much of it. I am pretty sure the twitching went away after several months, or else I got so used to it that I didn’t notice it?!

Now, I am getting the twitching again (aged 38) and it made me think about whether it had ever stopped or not. I feel the twitches mainly when sitting, or lying down and they are all over (thigh, calves, arm, shoulder, abdomen, feet, etc)

I started looking online (big mistake) and ALS kept popping up. I had read those symptoms the first time I had twitching but didn’t think I had any other signs. Now I’m thinking I do. I’ve always been a clumsy person, but I’ve definitely ran into walls and furniture lately, balance has been off, and I noticed I was holding things differently in my hands. I read on the “read first” post, that it doesn’t just mean weakness, but the inability to actually use your muscle. I can use muscles, but they do feel different. Would that come before I actually lose the complete ability to use my muscle?

I will call my PCP and see when I can get in for an exam and bloodwork and get a referral to a neurologist. I was just wondering if any of this sounds familiar or not. I am consumed with worry, even though I know it won’t do any good. I have small children at home and the thought of this has me highly worried about all of our futures. I don’t like waiting and seeing what happens and the unknown is not my friend. Thank you for taking the time to read this. I appreciate it.
 

KarenNWendyn

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First thing is to read this:
https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html

If you read that, you’ll know that ALS is about failing, not feeling. So feeling weak, feeling funny, running into things, and holding things differently are not typical signs of failure.

Failure would be like inability to stand on heels or toes, inability to get up from chair without using your hands, inability to step up on a step, inability to fasten buttons or open jar lids or packaging tabs or to sign your name. And this is assuming you could do these things previously.

With ALS, the failure comes on quietly without feeling weak.

If you read the attachment, you’ll also learn that twitching is common, nonspecific, and meaningless in the absence of muscle function failure. Body wide twitching is especially non worrisome.

So I don’t see ALS in your post.

Make sure you’re eating a proper diet and keeping hydrated. Keep working with your doctors to find out what’s behind your symptoms. But it’s not ALS.
 

bp1234

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Thank you for the reply. I appreciate the insight from you. I think I’ve just become more aware of the twitches and dropping so many things that I pick up,. That just heightens my concern. Thanks again. I appreciate your response to me!

The muscle weakness is always constant, correct? There are times where I have a hard time gripping a pencil (not every day, not every time). This is just on occasion. That wouldn’t be what is considered ALS muscle weakness, correct? I have a doctors appointment but it’s still a few weeks away. Thanks!
 
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bp1234

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Hi, again. I have a question regarding my symptoms. As you stated, it’s about a “loss” of ability to do something you could do before.

My question is... would twitching/quivers, thinking you are weaker in one hand, etc come before that actual loss and inability to do something? As in, I have no loss of ability, right now, but could that be due to not giving it enough time to show up? Possibly having ALS but not being able to be DX until the muscle weakness shows up?

I am anxiously awaiting my visit with my PCP in a few weeks. I know even after that visit, it will be a few weeks before I could be seen by a neuro. There are times I think I’m crazy to think I could possible having this dreaded disease and other times I think it’s a good possibility.

I’m just wondering if the twitching could be “pre” muscle loss or “pre” inability to do something I could do in the past. As stated, I know twitching alone isn’t enough to be a diagnosis. Just curious if it’s the “pre” before the storm, perhaps? Thank you for your time. Once again, any insight as I await my appointment would be appreciated.
 
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lgelb

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No, because in ALS, there is no "thinking" you are weak. You are really unquestionably so weak that you have lost abilities. And as you have read, waxing and waning abilities argue against it as well.

As Karen pointed out, nutrition and hydration are very important in GI issues. If you have imbalances or deficiencies, they can manifest as twitching and feeling like you can't do things.

Best,
Laurie
 

bp1234

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Thank you for the feedback. I was actually able to see a nurse practitioner today, instead of waiting for my PCP in 2 weeks.
She was concerned, but felt like it could be any number of things. She said it’s normally from medication, but I’m not on any. She decided to do blood work and then go from there.
She checked my reflexes and muscle strength on my legs and feet and said all of that was great and I was stronger than she expected me to be. So that makes me feel much better!
If my blood work comes back as normal, she said they would look into doing a neuro referral and then EMG to see what’s going on. While I’m still concerned, I do feel/hope that my symptoms are from something else rather than ALS.
Thank you ALL for your responses. If I find myself needing this forum (and I pray I don’t!), I will be back and will know how helpful you all are.


Thanks again!
 

bp1234

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Hello, again. I have had some more concerns and thought I’d check in here, since I can’t talk to my doctor until Monday.
1. I’m worried I do have some weakness. I am still able to use my left hand/fingers, but I notice I have let some things slip through my fingers and that results in me dropping a utinsel, laundry, etc. Is that a concern or a sign of the area beginning to fail?
2. My twitching has not let up at all. I thought it was better yesterday but since my doctor’s appt it has increased. Even as I start to fall asleep, I begin jerking or twitching. My twitching seems like sometimes it’s a large area that is having quivering. Not only do I have twitching every time I sit or lie down, but now when I’m standing, too. Is twitching while not resting more of a concern for ALS more than resting twitching?
3. The twitching has moved into my hands, mainly thumb and pinky and also my face, near my mouth. This was not happening yesterday.

I appreciate any insight into this, since it’s the weekend and I can not contact my doctor. I did not hear back from any of my blood work but besides my iron being low, it always comes back just fine. I have read so many conflicting personal accounts of being diagnosed with this disease and so many discuss the twitching before noticing any type of muscle weakness. That’s what has me so confused and now even more worried. I appreciate getting any insight from people like you that know about this disease in a first-hand experience. Your comments are so very valuable and appreciated. Thanks again!
 

ShiftKicker

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Hi-

Please understand this is not a health anxiety resource or general medical advice forum. This forum exists specifically to support those with ALS and their caregivers. In order to make sure the general forum is not inundated with people who are worried about ALS, a small subforum was set aside to answer some questions people may have before they move on- either reassured they don't have ALS or for further exploration with their doctors. The DIHALS subforum is not a place to seek emotional support for anxiety, nor is it a place to repeatedly ask questions after people have spent a good deal of time already telling you they don't see ALS.

Please re-read the https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html thread, paying careful attention to the last part of it.

Please wait till Monday to ask your doctor your questions. This forum can not be used as a weekend health anxiety resource just because you can't speak to your doctor immediately.
 

lgelb

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No, no, and irrelevant.

If you searched here on "twitching," using the search bar up top, you'd see that whatever vision you have of twitches as a primary feature or harbinger of ALS is way off. Google mush and click bait doesn't count.
 
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