Twitching That Stops When Flexing or Stretching

[MindfulMeditator]

I've been holding off on posting here for over a month, content with silent lurking, following the suggestions to look at the aboutbfs forum, trying to glean what I can from various threads. I'm convinced my symptoms are slightly more on the MND side than most of the panickers I read.

For example, I'm 40, and my symptoms started with a unilateral swallowing issue about a year ago, (dysphagia/dysmotility is transient, and seems limited to one side). I even had intermittent periods of drool collecting in the left side of mouth. And roughly a month ago I started getting daily widespread, bilateral twitching, that seems to have settled into my right side, with twitching in the right foot, right calf, and right pectoral. Occasionally I get flickers on the left side, including the left upper lip.

Aside from my occasional left-sided swallowing issue, I have no objective weakness as of yet.

Brain MRI is clear. Blood work/Labs are clean. I'm slated for an EMG at UCSF in two weeks, at which point I will also be seeing a neuro.

Although I tend to be more on the careful side, which makes me acutely aware of small changes, much of this happens despite what I'm doing, or what mood I'm in.

I know better than to ask here if I have ALS. But I have two questions that I couldn't find being discussed in the forum already:

1. 1. I've read a few people mention that MND-related twitching can't be stopped by flexing, or stretching. But I've never seen this officially announced, or corroborated by any PALS or doctors. I seem to be able to stop my main twitches with flexing. Can ALS twitching be stopped with flexes/stretches? Is there even a distinction?
   
2. 2. With Bulbar onset, is the tongue always affected first? Would there be some test I would be reliably failing at this point? (e.g. pressing my tongue in all directions, saying certain words, etc.)

I've come to terms with this being a possibility, and I'm okay with whatever the universe throws at me. I've lived many years beyond what some poor kid who died with Leukemia has. It's all relative. This shouldn't be confused with apathy. But I'm not going to bullied out of my time by a mistake in the body.

Appreciate any feedback.

 

[MindfulMeditator]

Bulbar Onset Question

My last thread wasn't exactly a big hit, so I'll try to simplify this.

Regarding bulbar onset:

1. Does bulbar onset start in one side of the throat, or both?

2. How early would control of the tongue be involved?

3. Would limbs be affected at the same time, early in the onset?


Thanks

 

[affected]

Did you read the sticky title NEW MEMBERS READ BEFORE POSTING mate?

Bulbar onset involves the tongue and palate first usually - trouble swallowing liquids, foods and a very noticeable change in speech - everyone notices. You feel totally normal.

Limb onset is a different thing. Highly doubtful you have two onsets at once.

You have an EMG soon, best to wait for that and ask specialists doctors who are examining and testing you what they think is going on.

 

[MindfulMeditator]

Did you read the sticky title NEW MEMBERS READ BEFORE POSTING mate?

Bulbar onset involves the tongue and palate first usually - trouble swallowing liquids, foods and a very noticeable change in speech - everyone notices. You feel totally normal.

Limb onset is a different thing. Highly doubtful you have two onsets at once.

You have an EMG soon, best to wait for that and ask specialists doctors who are examining and testing you what they think is going on.

Hi, thanks for the reply. I did read the sticky, long ago when I was initially just lurking. I'm not sure how that thread applies to my particular questions. I'm quite literally posting because I could never find answers to specific questions. The double thread thing escaped my attention until after may last thread got merged.

Thanks for the feedback. It clears up a few things, though didn't totally answer all of my specific questions. I agree that I should also submit these to the neurologists at UCSF.

 

[Nikki J]

I think Tillie answered 2 and 3. As to 1 I have never heard of it. We once had someone report one sided swallowing issues. It was not MND. I do not remember what the answer was

I don't know that there are hard and fast answers about twitching. Twitching is, as you know, very nonspecific as a symptom. For what it is worth, I do not twitch a lot but when I do I can't do anything to stop it

Good luck at UCSF

 

[twitchykitty]

I can't speak for everyone, but personally stretching my arms in particular makes the twitching worse and nothing stops it

 

[Katy Sunshine]

I've been holding off on posting here for over a month, content with silent lurking, following the suggestions to look at the aboutbfs forum, trying to glean what I can from various threads. I'm convinced my symptoms are slightly more on the MND side than most of the panickers I read.

For example, I'm 40, and my symptoms started with a unilateral swallowing issue about a year ago, (dysphagia/dysmotility is transient, and seems limited to one side). I even had intermittent periods of drool collecting in the left side of mouth. And roughly a month ago I started getting daily widespread, bilateral twitching, that seems to have settled into my right side, with twitching in the right foot, right calf, and right pectoral. Occasionally I get flickers on the left side, including the left upper lip.

Aside from my occasional left-sided swallowing issue, I have no objective weakness as of yet.

Brain MRI is clear. Blood work/Labs are clean. I'm slated for an EMG at UCSF in two weeks, at which point I will also be seeing a neuro.

Although I tend to be more on the careful side, which makes me acutely aware of small changes, much of this happens despite what I'm doing, or what mood I'm in.

I know better than to ask here if I have ALS. But I have two questions that I couldn't find being discussed in the forum already:

1. 1. I've read a few people mention that MND-related twitching can't be stopped by flexing, or stretching. But I've never seen this officially announced, or corroborated by any PALS or doctors. I seem to be able to stop my main twitches with flexing. Can ALS twitching be stopped with flexes/stretches? Is there even a distinction?
   
2. 2. With Bulbar onset, is the tongue always affected first? Would there be some test I would be reliably failing at this point? (e.g. pressing my tongue in all directions, saying certain words, etc.)

I've come to terms with this being a possibility, and I'm okay with whatever the universe throws at me. I've lived many years beyond what some poor kid who died with Leukemia has. It's all relative. This shouldn't be confused with apathy. But I'm not going to bullied out of my time by a mistake in the body.

Appreciate any feedback.

Hi Tony,

Sorry you find yourself in the position to even have to lurk here. I was diagnosed with Bulbar Onset a little over a month ago. The nine months of testing that led up to the diagnosis were the most frightening of my life, so I definitely understand. (1) For me, both sides were affected. (2) The issues with the tongue were the first symptoms I had after speech problems (Perhaps one caused the other?) (3) I have absolutely no limb symptoms whatsoever.

I hope this helps. I send you good wishes and prayers on your upcoming Neuro appointment.

Sincerely,
Katy

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

 

[MindfulMeditator]

I think Tillie answered 2 and 3. As to 1 I have never heard of it. We once had someone report one sided swallowing issues. It was not MND. I do not remember what the answer was

I don't know that there are hard and fast answers about twitching. Twitching is, as you know, very nonspecific as a symptom. For what it is worth, I do not twitch a lot but when I do I can't do anything to stop it

Good luck at UCSF

Thank you very much for the detailed response. It clarifies quite a bit, actually. Appreciate all of the insight. I'm confident this thread will help someone else with the stretching/flexing question too, as I've seen that distinction asked about so often at various forums. I'll update here after my EMG stuff.

Thanks again. Cheers.

 

[MindfulMeditator]

I can't speak for everyone, but personally stretching my arms in particular makes the twitching worse and nothing stops it

Thanks for this. This seems to corroborate Nikki's experience. It seems more likely there's something to this idea that flexing or stretching doesn't stop a MND twitch. Curiously, I've read some at the BFS forum say that their "benign" twitches weren't stopped by flexing either, while most others said it aborted the twitch. It's strange. I seem to able to stop mine with stretching/flexing. Only way to know for certain is this EMG. Thanks again for all of your insight.

 

[MindfulMeditator]

Hi Tony,

Sorry you find yourself in the position to even have to lurk here. I was diagnosed with Bulbar Onset a little over a month ago. The nine months of testing that led up to the diagnosis were the most frightening of my life, so I definitely understand. (1) For me, both sides were affected. (2) The issues with the tongue were the first symptoms I had after speech problems (Perhaps one caused the other?) (3) I have absolutely no limb symptoms whatsoever.

I hope this helps. I send you good wishes and prayers on your upcoming Neuro appointment.

Sincerely,
Katy

“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

Hey Katy, thanks for clearing that up. It sounds like it's less likely to have both swallowing symptoms along with limb symptoms simultaneously at onset. I've seen at least one video that corroborates that, as the woman in question was hiking around freely.

I empathize about the stress. Initially, over the course of the past seven months, I stressed so much over this stuff that I finally got into mindfulness meditation (Jon Kabat-Zinn videos on Youtube) and I'm oddly more at peace with whatever happens now. I'm sure I'll still be crossing my fingers, though. I'll post results when I know more. Thanks for the thoughts. I'm sending my best wishes your way as well.

P.S. My name isn't Tony, it's Brian. But Tony works. Ditto for "hey you," and "that one guy."

 

[Katy Sunshine]

Hey Katy, thanks for clearing that up. It sounds like it's less likely to have both swallowing symptoms along with limb symptoms simultaneously at onset. I've seen at least one video that corroborates that, as the woman in question was hiking around freely.

I empathize about the stress. Initially, over the course of the past seven months, I stressed so much over this stuff that I finally got into mindfulness meditation (Jon Kabat-Zinn videos on Youtube) and I'm oddly more at peace with whatever happens now. I'm sure I'll still be crossing my fingers, though. I'll post results when I know more. Thanks for the thoughts. I'm sending my best wishes your way as well.

P.S. My name isn't Tony, it's Brian. But Tony works. Ditto for "hey you," and "that one guy."

Ack!! Oh-mi-gosh, I'm so sorry, Brian! I don't know where in the H3LL I got Tony from. Who knows where I pulled that out of. With that in mind... "Hey you", thank you for the good wishes and for the tip on the meditation videos. Always looking for things that might help me relax. Good luck to you and will keep my fingers crossed with you.

 

[MindfulMeditator]

Help Interpreting Abnormal EMG (And Widespread Twitching)

I would like to say thanks ahead of time to whoever can help walk me through this. Insight is much appreciated.

This is an update to my last post.

A few things from the start possibly worth noting during the exam. I did not have brisk reflexes in any of my limbs, and I did not show Babinski sign. I'm unclear on how reliably diagnostic that is. Second, besides my occasional left-side swallowing issues, I don't have any notable weakness, I don't slur, and my tongue isn't showing fasciculations. My twitching seems limited to my limbs and occasionally my chest and back.

Now, for the interesting part. My EMG was "dirty," but it wasn't explained how or to what extent. In fact, on the day, the neuro actually told me at the end of the study that it was "normal," and not to worry about MND. Content, I left, but requested the results on the way out anyway. Several days later, when faxed the detailed report, the description was "abnormal," with a host of findings (see below). I called the hospital and asked about the discrepancy, and between two different assistants learned that I wasn't supposed to have gotten the detailed report I got, and that a "different version" the doctor signs off on later, with the description omitted, replaces the findings with an impression. I was supposed to receive this sanitized version with an impression saying no sign of MND. I now have a call out to that doctor for a callback explanation (I was told to expect a callback in the week).

So that's the context. I do have another EMG slated for a more local doctor in the next month. Despite not getting any twitches during that EMG, it went fairly standard. Hopefully my next provides so more details.

What I'm confused about is what these findings mean to anyone, if anything. I'm trying to determine what led a doctor to tell me my test was "normal"
when on his end it was technically 'abnormal' (in apparently several ways). If anyone understands any of this, I'd be curious to get your insight. Much thanks.

-

 

[Nikki J]

I am very confused by this. The description states abnormalities in the EMG as well as in the ncs BUT when I look at the specifics of the needle examination ( the last chart) which gives the specifics of the exam they are all normal. The interpretation is not supported by the chart.

I also question the existence of 2 reports- a version for a patient, and the real one for the doctors? This sounds incredibly unethical and likely breaks some law. Patients are entitled to their medical records. I truly wonder if there is clerical error somehow that led to an incorrect matching of interpretation and charts and you got a garbled excuse

 

[ShiftKicker]

That's what I thought too. This looks more like a medical transcription/dictation mix up to me. It's good to get a call from the specialist, so they can explain the contradicting results. I'd recommend requesting a corrected and authorized report as well- As Nikki says, it's illegal to make false medical reports. That's a major liability problem for the specialist.

 

[MindfulMeditator]

Thanks for the reply, Nikki. You've captured my sentiment precisely. When I heard the front desk candidly let that slip, I immediately wondered what this fairly renown teaching hospital (UCSF - highly ranked nationally in neurology, no less) was letting their EMG clinic get away with behind closed doors. Not that litigation is on my mind at the moment, but I briefly laughed to myself how incriminating it was they would tell patients this, especially since my phone has an autorecording app that picked up all of it should I ever need it. Obviously I'm very interested in what the doctor has to say in response to my call.

Re: "Normal". I don't know how to read this, but my initial thought was that 'recruitment' simply meant I'm able to use the muscle on command without issue. If the nerves have reinnervated (as in early in the course of something), this normal response would be expected, as weakness hasn't set in yet. I'll defer to you on that.

This is partly why I thought it might be a good idea to make a new thread, to get more EMG-seasoned eyes on these results. I will be taking this to another neuro (local) soon, when I get another EMG. I'm now glad I scheduled it as a backup.