I'm picking up the (NOT!) good vibrations.....

[BethU]

Kind of like internal, invisible twitches? Makes sense to me ... if there are "gross" twitches we can see and/or feel on the surface, maybe there are internal vibrations, too (in the "subtle body," as they'd say in yoga). Maybe an acupuncturist could answer that ... interruptions or little whirlpools in the flow of chi? This is pretty woo-woo territory, but people are experiencing this as something real. (Of course, what our brains experience is "real," too, even if it doesn't reflect what is happening in our bodies. Like phantom limb pain.)

But ... it would still have to be muscles doing the twitching, wouldn't it, even in the trunk and chest? Are there that many tiny muscles throughout the trunk? Organs don't have mechanisms to twitch or vibrate on their own, do they? ... they just kinda lie there ... except for the heart (which is a muscle)?

(I was reading an MG Forum for nostalgia's sake ... remembering the good old days when the neuro said I had MG ... and found someone there last night asking if anybody else felt "internal vibrations.") So it's not just us.

Beth

 

[MtPockets]

Internal Vibrations

I have noticed the vibrations increase after exercise, such as trying to get dressed, transferring to wheelchair, etc. After these, when I am relaxing and sitting still, I can feel the internal vibrations. It is almost like extreme muscle weakness kicks this into gear.

Then again, maybe, it is just left over from that alien abduction thingy. LOL :-D:-D:-D

 

[BethU]

Then again, maybe, it is just left over from that alien abduction thingy. LOL :-D:-D:-D[/QUOTE]

That seems unlikely to me. I had absolutely NO ill effects from my first three abductions, and only a little wave motion in my chi from the fourth.

Must be some other explanation!
Beth

 

[olly]

bethu
i have heard of fibrillations that are invisable muscle twitches and can be detected on a emg and can indicate nerve desease just like visable fassiculations.

capt al
i am the same,i dont feel the vibration when moving but as soon as i stop and sit/lay i can feel them. it also seems the more active that makes the spasms/weakness worse,the stronger the vibration.

rose
after all tests,serial mri's for 7yrs to rule out ms etc i was diagnosed with mnd in nov 07, but no "definate" diagnosed of pls or als. my symptoms and progression seem to be in line with umn desease but over 18mths ago it was found i have hypotonia/loss of contraction/lmn in my left lower leg which has slowly got worse and when i walk my leg swings back and gets tired easily, also it looks like i have some atrophy in my left foot/ankle. about the same time i started with slight swollowing problems and the bulbar symptoms have been progressing more for the last 5mths.
my neuro told my doctor he can not place me for certain with a definate diagnosed.
he is a old neuro, my pt calls him "the old professor". in pure pls there should be no lmn involvement,if there is some small amount it is called umn dominant als but this classification is given in studies. on autopsy there is always lmn involvement in pls.
as pls is so rare and pls is hardly seen in the uk i dont think there is any neuro fully qualified to diagnosed pls. i can remember having a nvc which was normal but can not remember if i had a emg, to be honest i dont think i have.
like you i have trouble getting food down and have to swollow a few times.
i can feel the weakness when i swollow, it is at the back of the tongue/throat when you swollow to push the food down.
by the way,the speech therapist is coming on monday 14th july at noon as she wants to watch me eat my lunch..............that will be nice............not lol.
take good care
caroline:-D

 

[CindyM]

That seems unlikely to me. I had absolutely NO ill effects from my first three abductions, and only a little wave motion in my chi from the fourth.

Beth- thanks for the giggle! And try to stay away from those little green guys, OK?

 

[rose]

area 51.... maybe we're receiving signals (JK)

This has been very interesting to me....

Caroline, I wonder if the vibes could be picked up by EMG, but, if they're UMN rather than LMN I'm presuming the test would still be considered normal (?) ... I'm very relieved to hear that your speech therapist is scheduled. That's only two weeks away Make sure you let us know how she finds you. ... and isn't it gross about the food left over in the mouth? When I had my swallow eval, I felt horrible opening my mouth so that they could check to see how the bite of cookie fared that I was instructed to eat.

Back to the vibes:


Everyone here that has commented on having these vibrations (fibrillations?) has felt them in their chest and does have some bulbar manifestation. The laryngeal nerve is a cranial nerve, so the recurrent laryngeal nerve is a branch of that nerve and hence also originates in the brain stem (?) and if so, then they would be LMN rather than UMN.... (?)

Also of interest is that exercise or exertion also brings it on for others ~ after the fact. This was one of the puzzling parts of it for my doctors back when we were in the maybe asthma/pleurisy/ sicca bronchitis stage of diagnosis attempt.

For me, it started in the chest, and if it is a nerve to muscle miscommunication, I do not know what muscles would be affected by the recurrent laryngeal nerve, but as it goes down in the chest, and my voice started fading at the same time, it would be a prime suspect. And, why would that nerve loop down there if there was nothing for it to signal to? Is it t too much of an assumption to think it is this specific nerve, and muscles it makes contact with? ... I rarely feel it in my chest anymore, its now mostly in my hands and the one stupid foot. So far no thigh, calves or anywhere else. Sometimes it travels up my arm up to the elbow, but no further.


It hasn't been random for me. I remember distinctly the first time I felt it in my right hand, it coincided with I first was put on the prednisone and plaquenil, and I wondered if it was as side effect. It was over 10 months before I felt it in the other hand, and then the space between that, and when my foot started in was only a couple of months apart.

I'm starting to feel a little anxious about my appointment next week down at Hopkins. I really want to know, need to know where I stand, but yet don't want to....:?

 

[lovelily]

Hi Rose....I get this in my one foot, and the neurologist said that they refer to it as 'purring', like a cat. I thought that described the sensation very well.

take care

 

[wright]

A few more things to maybe help.

The laryngeal nerve or more correctly, recurrent laryngeal nerve does something a little odd, anatomically. It actually dips down in your thorax (chest cavity) and then kind of makes of a u-turn and comes back up to innervate the larynx (that is why it is called the "recurrent laryngeal nerve"). It is a cranial nerve that comes from the brainstem, so yes, it is made-up of lower motor neurons.

My money is still on sensory nerve dysfunction (the laryngeal nerve is a mixed nerve, so it is both a motor and sensory nerve) that is causing these vibrations.

Rose, those neuro's at John's Hopkins are as smart as they come, so ask them if they have any insight.

As always, take care all.

 

[BethU]

[QUOTE=CindyM;46920]Beth- . . .try to stay away from those little green guys, OK?[/QUOTE]

I'll try to . . . but I'm in L.A. They're everywhere!
Beth

 

[BethU]

QUOTE-Rose.For me, it started in the chest, and if it is a nerve to muscle miscommunication, I do not know what muscles would be affected by the recurrent laryngeal nerve, but as it goes down in the chest, and my voice started fading at the same time, it would be a prime suspect.

When the speech pathologist at the hospital last December told me that she thought my recurrent laryngeal nerve had been damaged during open heart surgery, she said, "When I was outside your room, as soon as I heard you speak, I knew you'd had heart surgery, because that's what people sound like who have had damage to the recurrent laryngeal nerve during surgery."

(Of course, the neuro who diagnosed me with ALS also said, "As soon as I heard you speak, I knew you had ALS, because that is what people with ALS sound like." My conclusion: disarthria sounds the same no matter what the cause.)

Anyway, the speech pathologist who was doing my swallowing test said that the r.l.nerve affects speech and swallowing, etc. ... all the bulbar processes.

(I have ruled out her diagnosed, however, as I figure one-time nerve damage during surgery wouldn't be progressing like this, and my ALS symptoms are spreading and worsening just as everything says they are going to do.)

Hope you get some answers! And good ones!
Beth

 

[rose]

Thanks everyone,

Lovelilly, purring describes it very well. I'm glad you mentioned it.... Did you ever see about a referral to Hopkins? I really do like them!

Wright, I am going to ask next week when I'm down in Maryland, and maybe will get some answers about this, maybe not. The reason I started the thread was in hopes of finding out if it was a clear indication of something, but its not seeming like it is. The other reason was to find out if anyone else does this. Company is good for the morale. :wink: Do you know the purpose of the recurrent laryngeal nerve going into the thorax? What muscles does it innervate there? Or does it just come back up for the larynx only? It's amazing to me, this time last year I don't even know if I was aware that I had cranial nerves specific to the brain stem, much less their numbers! I hardly ever feel the sensation in my chest anymore, its moved on almost completely to the limbs now.

Beth, I don't think the "good" answers option is still available to me at this point, but more answers than I have will be welcomed. I agree that it couldn't be just the surgery, or the possible high sodium for that period of time that is responsible for everything going on with you, as it is continuing to progress, and you've got the UMN signs now too, but I sure hope you spend some time focused on that when you (eventually) get into the clinic!

take care everyone

 

[lovelily]

Hi Rose....

I just received a referral to see Dr. Jennifer Michaels at 'UMDNJ' University Hospital in Newark, New Jersey.

I called to make an appointment and now my neurologist has to send ahead all my medical history, and doctor notes for her to review, so she can see if she thinks this is 'neuromuscular' before I am accepted as a patient. I guess they weed out unnecessary people. Then they will call me, to make an appointment.

You were speaking about this vibration feeling being 'fibrillation'....it is not. You cannot feel 'fibrillation'. I had fibrillation on one 'EMG' and had no sensation of it. The doctor said as much.

Take care
lovelily

 

[wright]

Hello again Rose

Yes, the recurrent laryngeal nerve only innervates the larynx (the larynx is where the voice box is located, by the way). Anatomically, it is an odd nerve and I'm not sure why it makes the U-turn like it does. It's a branch of the vagus nerve so maybe something in the architecture has it do that. I know anatomy well but I'm classically trained as a physiologist, so I am not an expert in anatomy. I'll see if one my colleagues knows.

Lovelily: you are correct in saying you can't feel fibrillations. They are due to the contraction of a single muscle fiber so can't be seen or felt; only an EMG can detect them. The reason fasciculations can be seen and felt is because they are due to the contraction of a single motor unit, which is made-up in part by as many as 1,000 muscle fibers.

I'm looking forward to hearing what causes this "purring" sensation.

 

[lovelily]

Hello Wright!

Thanks for that information! At least I have some sort of idea as to what is happening.

take care
lovelily

 

[wright]

Oops

I just noticed that I made a mistake in my last post.

Fibrillations ARE NOT due to contraction of a single muscle fiber . . . BUT RATHER . . . they are due the action potentials (electrical activity) of a single muscle fiber.

The same goes for fasciculations: they are due to the electrical activity of the muscle fibers of a single motor unit AND NOT to the contraction of those muscle fibers.

The electrical activity is what causes the muscle fibers to contract.

Good thing my students didn't hear me make that mistake; they would have been all over me for not thinking before I spoke. Let's keep it our little secret.