Is Twitching ever the "first" sign

[Kim C]

Hi every one. As you may remember, my mother passed away from ALS in May. She is the only one in our family that I am aware of that has had ALS. But that doesn't keep me from worrying. For about a week and a half now, I have been experiencing muscle twitches. Started in my calfs one morning before I got out of bed and was contained there for about a week or so. Now I'm having twitches in my quads, sometimes my feet, occasionally an arm or hip area. The twitches sometime are barely noticable, sometimes I only see them if I happen to be looking at my legs. But sometimes it feels like my muscles are having a fight with each other. Between the "fights" my muscles have and the worry, I'm am about crazy. I don't feel them when I am moving around, just when sitting at work and in bed. Mom was pretty far along before she was diagnosed this time last year and I don't recall her ever saying anything about muscle twitches. In fact, after the MD pointed them out to us, she always said she couldn't feel them. Since she never noticed them I don't know when they began.

I have no weakness or atrophy of the legs, and my knowledge gained from mom's illness tell me I have nothing to worry about. However the irrational/fear side of me is terrified.

Does ALS ever start out with twitches and no weakness of the muscles?

I am going to see my family physician next week, but maybe I should go directly to neurologist? I get some comfort from the fact that the twitches are not localized to my calfs, but then again maybe the anxiety of causing the over all body twitches.

Help!

 

[Nikki J]

Hi Kim
Sorry that you are having this worry. Honestly, I suspect it is more PTSD than ALS! You have been through a terrible experience and handled it with grace and courage. Having seen what you have seen I understand how frightened you are.

The twitches. First diffuse twitching is a good sign secondly twitches usually come later, the people we hear about who had twitches first usually turn out to have had some abnormality along with it, clinical weakness abnormal reflexes etc.

The familial thing. You know from being here that one ALS relative does not put you at increased risk. FALS is VERY rare and most of us have histories like mine horrific as it is that 4 out of 5 of my mom and her siblings had this and that my only sibling and I both have it it is not unusual for FALS. My neuro looked at my family history and just nodded

Go to your pcp, they can examine you, perhaps test for some blood chemistries. If they think you should go further they will send you

Let us know how your appointment goes

Best wishes

 

[Atsugi]

To my knowledge, twitches are never first in ALS. They are most common in anxiety and stress, though.

My PALS would get twitches only after the limb was fully involved, after the weakness was nearly total. I was told that the twitches are the muscles "last stand" before being completely paralyzed. That's how it appeared to me.

You don't have ALS. You have worries combined with stress. So did I. For about a year after my PALS passed, I worried that I might "get it" somehow, although I knew better.

 

[MaxEidswick]

>You have worries combined with stress. So did I.

just remember the odds are heavily in your favor…


>For about a year after my PALS passed, I worried that I might "get it" somehow, although I knew better.

can you imagine what our lives would be like if ALS were contagious! The leper's of the 21st century ...

 

[Kim C]

Atsugi & Nikki,

Thank you for your replies. Mom was almost fully involved before she ever went to the neuro, and we don't know for how long she had fasiculations prior but after the neuro pointed them out to us, we watched limb by limb go out.

I will try to not worry so much. Hopefully the fasics will be gone before my MD appointment next week but I've been hoping for that for about 10 days now. After seeing what I have seen ( and you both as well), it is reasonable to be terrified I guess but I know I am probably making things worse.

I will let you know how things progress.

Kim

 

[azgirl]

The first symptom I noticed was twitching in left leg, arm and torso. Followed closely by weakness (couldn't ride my bike up hills anymore) and then foot drop. A month later cramping. And then 2 months later diagnosis.
Your twitching sounds more like stress to me and hope I'm right. Let the doctor check it out.

 

[Dusty7]

I found your most revealing statement to be:
"I don't feel them when I am moving around, just when sitting at work and in bed."
To me this indicates they are most likely anxiety related. When you sit down and have time to worry, you feel them. Also, I have read that BFS fasciculations are present when not moving the muscle. ALS fasciculations are present whether moving the muscle or not.
All in all, I agree with Nikki. After seeing this disease at work, you may have an outbreak of ALS fear occasionally, but I think that's probably all it is. See your PCP and good luck!

 

[Zaranataly]

I found your most revealing statement to be:
"I don't feel them when I am moving around, just when sitting at work and in bed."
To me this indicates they are most likely anxiety related. When you sit down and have time to worry, you feel them. Also, I have read that BFS fasciculations are present when not moving the muscle. ALS fasciculations are present whether moving the muscle or not.
All in all, I agree with Nikki. After seeing this disease at work, you may have an outbreak of ALS fear occasionally, but I think that's probably all it is. See your PCP and good luck!

:/ this is puzzling. I don't feel any fasiculations when moving and going on about my normal routine I feel them when I drive, lay down, sit down, and standing. And if i'm having them in a muscle and i move they go away (almost always). They don't last long enough for me to pull out my phone and record them. But they are visible and small. Not like te ones i've seen on youtube for ALS. Yet, my doctor thinks it's still ALS. Dysphagia along with twitches were my first symptoms ever. I'm not diagnosed (hopefully never) but I just wanted to give you my experience with fasiculations. (Btw mine are all over my body and I've had them every day for 3 years).

I hope yours go away soon & it's just anxiety that's causing them.

 

[monster]

In 2006 my symptoms started and very slowly progressed. I didn't feel my fasciulations till 2011. After a emg picked up my fasciculations in 2011, at a Als clinic, I was told I had BFS. I was diagnosed with upper motor neuron syndrome in 2013, but I still don't have 'clinical' weakness'.

In my personal experience fasciculations came later. At my last clinic appointment I was told mine still are benign.

Good luck at your appointment.

 

[skipper66]

Kim C,
I used to have some twitching several years back. They discovered it was due to stress and anxiety. You have been through a very traumatic experience with losing your mom to this terrible disease. I almost got myself worked up the other day thinking I had ALS because my left arm has been doing some weird stuff and I couldn't at first figure out what was going on. I just have tendinitis of the rotator cuff. Thank God! But, I was starting to begin to freak out.
I am sending you a virtual hug Kim. I am so sorry for all you've had to go through. This Sunday, will be 17 years since I lost my own mother. Kim

 

[Barbie]

I will never for get the day I saw my husband's bicep twitching while we were driving down 'the road...I had never seen anything like that and it freaked me out. that was about 3 months before his diagnosis. He was already having slurred speech and weakness at that time however. He knew something serious was going on--I was oblivious.

 

[Clearwater AL]

Did somebody miss what Dusty7 posted? ("ALS fasciculations are present whether moving the muscle or not."). If you can move and the fasciculations stop... it's ANXIETY! Not just Dusty7 but it has been posted over and over and over by others... moving, walking, standing, driving does not stop ALS fasciculations. Otherwise it's BFS or ANXIETY. If you believe you have ALS just because you have fasciculations... buy a Lottery ticket! The odds are about the same you DON'T have ALS and that ticket is gonna make you a millionaire!