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

[rose]

OK, another question that I'd love an answer to. My MND started in the bulbar area about 21 months ago, HOWEVER when all of that was just getting started, my right hand (my dominant) started getting stiff, fingers sticking in position etc. No twitching or anything else until about nine months later. I do understand that the stiffness would be UMN, and in April my reflexes were brisk (3 and 3+) for the arms (only 2 for legs though which I think is normal(?) ) For the last number of months my right hand vibrated or buzzed fairly often. Then my left started in. And the left hand on occasion will jump, the thumb will move on its own accord all day sometimes. So..... I reasoned to myself that it wasn't that bad, bound to happen, etc. Last month, I found out by accident really (trying to complete FAA annual qualification training - I'm a flight attendant) that my arms had lost a good bit of strength. I could barely open some of the aircraft doors in "manual" or emergency mode (the FAA likes to be reassured we can actually evacuate a plane if necessary) Who knew? I didn't, and as I hadn't felt other than very occasional twitching in my arms I really wasn't expecting it. It set me back a bit (emotionally) but all it all I wasn't surprised. NOW my right foot is buzzing. It started last Sunday night after I worked a trip ~ probably one of my last as it looks like its disability for me come next month ~ and I was totally exhausted. The buzzing in my foot has not stopped. If I wake in the night, its vibrating, during the day its there. What is it? Does anyone know what the classification of this is? Is it UMN or LMN is it a form of fasciculations? Is it a harbinger for something specific, or is it just something that "happens" I go back down to Hopkins on the 7th, but if I can get answers sooner it would be appreciated. ... thanks a bunch

 

[hopingforthebest]

Hi Rose

Don't know but there is a "WRIGHT" that might. Go and search last WRIGHT post and send a private message. WRIGHT will reply asap.


Good luck Rose. I am praying for you!

Patty

 

[rose]

Thank you Patty, I just did. I hope your Hubby is doing well this evening.

 

[rose]

Wright, I responded to your message late last night. I wanted to add, though, that I guess the best way to describe how it feels other than that it is vibrating, is its a tremor, but because I can't see it, I didn't think that was a very accurate description. M;y foot finally stopped for a little while. When I awakened this morning it had stopped. Although I've felt it since, now its just intermittent like my hands are.

 

[patricia1]

Hi Rose
I had that vibration on waking in the morning for several years Now I dont have it and I have Bulbar onset and none of my Mds knows what I am talking about.
Sometimes it was in my feet and I thought it was a motor vibrating in the floor.

Pat

 

[rose]

Hi Rose
I had that vibration on waking in the morning for several years Now I dont have it and I have Bulbar onset and none of my Mds knows what I am talking about.
Sometimes it was in my feet and I thought it was a motor vibrating in the floor.

Pat

Exactly! a motor in the floor, describes it perfectly (or whatever surface we happen to be touching with whatever part of us is doing the Beach Boys (good vibrations LOL)

In the very start of this mess, the very very first thing, even before my voice, was I felt it in my chest. First they were saying it was asthma, then it was pleurisy (brought on by autoimmune) then it was sicca bronchitis, (autoimmune in nature) basically, no one knew what I was talking about. I'd say it was a vibration, like when we have phlegm in our chest rattling around, but there was no phlegm, and nothing ever came up when I coughed.

BethU posted something about how when she first became sick (virtually overnight) a speech pathologist told her that they recognized her voice problem right off the bat, that it was due to the recurrent laryngeal nerve that goes down and wraps around the heart and then back up into the neck, and she had just had open heart surgery.

When I read that, it was like a light bulb turning on for me, because first I had the chest sensations, and then my voice started getting weak. It took a year from that point to reach any sort of cause for my voice problems (I finally got to a laryngologist who saw the atrophy, and an emg was done that showed the de/re nervation.)

But no one, not one single doctor told me that the laryngeal nerve has a branch that goes down in the chest.

Thanks for responding Pat, maybe we can find out what it is, ....(and if it matters what it is.) :-?

 

[patricia1]

Exactly! a motor in the floor, describes it perfectly (or whatever surface we happen to be touching with whatever part of us is doing the Beach Boys (good vibrations LOL)

In the very start of this mess, the very very first thing, even before my voice, was I felt it in my chest. First they were saying it was asthma, then it was pleurisy (brought on by autoimmune) then it was sicca bronchitis, (autoimmune in nature) basically, no one knew what I was talking about. I'd say it was a vibration, like when we have phlegm in our chest rattling around, but there was no phlegm, and nothing ever came up when I coughed.

BethU posted something about how when she first became sick (virtually overnight) a speech pathologist told her that they recognized her voice problem right off the bat, that it was due to the recurrent laryngeal nerve that goes down and wraps around the heart and then back up into the neck, and she had just had open heart surgery.

When I read that, it was like a light bulb turning on for me, because first I had the chest sensations, and then my voice started getting weak. It took a year from that point to reach any sort of cause for my voice problems (I finally got to a laryngologist who saw the atrophy, and an emg was done that showed the de/re nervation.)

But no one, not one single doctor told me that the laryngeal nerve has a branch that goes down in the chest.

Thanks for responding Pat, maybe we can find out what it is, ....(and if it matters what it is.) :-?

I remember sucking on cough drops because I felt like I had Phelgm as well and couldnt get any up This is so crazy Does your voice change when you drink or swallow food?. I cant have a conversation while eating

 

[MtPockets]

Rose, I have experienced the vibrations you described. Mine have been in the chest close to where I guess my heart is located. I also have felt it in my big thigh muscles when lying in bed at night.
I was diagnosed with ALS May 2006. Limb onset, mainly the legs. Now it has moved to the arms, neck, swallowing muscles, and voice fades from time to time.
Sorry I can't answer your questions as to what it is, just know that I have it too.

 

[olly]

hi rose

i have had the vibrating feeling in my lower body, from the waist down mainly legs/feet since i started with umn symptoms 9yrs ago.
i think it is either the clonus or muscle weakness that causes it. it has never gone away,sometimes i can just feel it usually if i am having a good day and other times it is really strong. if you look on my posts i have posted about this before.
i too get a buzzing in my left side of the chest.
abnormal movements/myoclonus is also a umn symptom i have from a odd twitch of a limb or my right side of the body. on rare occasions it can involve my whole body and its like i have had an electric shock.
you sound like your experiencing umn symptoms in your body.
take good care.
caroline:-D

 

[crystalkk]

Hi Rose,

I get what I call an internal tremor/ vibrating feeling in my chest mainly when laying down. Now it is starting to happen occassionally when I am sitting up. I also get a vibrating feeling in my feet, mine does last long,
but it does happen alot at night when I am trying to go to sleep.

 

[wright]

Here is part of my reply (I have pasted it below) to Rose, who PM'd last night.

Vibratory sense is accomplished by certain types of receptors (vibratory receptors) that are subsequently "connected" to large, myelinated sensory nerves. It is generally accepted that ALS doesn't present with sensory symptoms, but that isn't always the case. Even Dr. Jean-Martin Charcot who first discovered ALS over 100 years ago noted sensory symptoms in a small percentage of patients. There was also a recent paper published out of Emory University that indicated that some ALS patients have some type of sensory symptom (the sensory symptoms were vast and usually only one type of sensory symptom was seen in a patient). They also noted that they were distal in nature (i.e. hands and feet) and if in a single limb, was focal in nature. It was a retrospective study, so the accuracy is a little suspect.
I also recall that some peripheral neuropathies and MS present with some type of "vibration feeling" that you might be describing. Basically it would be caused by damage to either the receptors or the sensory nerves that are responsible for feeling vibration and that Emory study did show damage to sensory nerves in a small percentage of ALS patients.

I hope that helps in some way.

 

[rose]

Thank you each of you for your replies. At least I have company I intend to ask about it when I go down to Hopkins next week. Its reassuring that it has happened with others here on the forum, because I figure that this board is only a percentage of those out there with MND, so hopefully, eventually, I'll tell a doctor that has some experience with other patients that vibrated! Its definitely not a tingle, which so many people at first think I'm trying to describe.

Patricia, eating and drinking affect my voice a little, but not as much as just talking does. Back in November my laryngologist injected my vocal cords with a filler, a type of collagen similar to the type used for cosmetic purposes. (my vocal cords were bowed and did not close) It is not a permanent solution, and actually didn't really make that much of an improvement in my voice, but it did seem to keep it from deteriorating much more for a number of months. The last few weeks my voice has become weaker again, and I'm assuming its the filler starting to be absorbed by my body. She'd said it the effects would last anywhere from 3 months to a year depending on how my body reacted to it.

Capt Al, my swallowing was found to be weak, and esophagus slow at the top, and recently that is what I notice (other than the foot thing) more than anything else. Its almost daily that it becomes harder to get food down. I swallow, again and again on the same food trying to get it to move! It doesn't seem to want to go down on the right side much at all. ... so, we bought a super duper blender, and I've become the smoothie queen at home. ...Today its a peanut butter banana smoothie kind of day.

What's interesting, (to me at least) is that all of us that have felt this, have felt it not only in the extremities, but in the chest as well. Yet, as far as diagnosis goes, so far I have only been told MND (hoping for more specifics next week) Capt Al was leg onset ALS, Patricia Bulbar onset ALS, and Caroline weren't you for a long time considered to be PLS? Crystal, are you still waiting for diagnosis?

I guess it really doesn't matter what it is, if it doesn't have some sort of known implication, but, back when I first started this journey, it would have been so helpful to have known that I wasn't alone. On the other hand, it was over a year before anything neurological was even considered. I found this forum when my tongue started to get rippled on the edges, (I'd googled "scalloped tongue") and even then, I joined mainly to be able to read the posts and reassure myself that I didn't have MND, I would not have thought to come on here about the vibration in my chest, or even my voice deteriorating.

... and I remember when I wrote my first post, thinking (i..e. hoping) that Al would respond and say something like, not to worry, didn't sound at all like ALS, stop dwelling on it and go outside and play LOL....but no ..... :?

 

[BethU]

This is a little late (and probably a mile short) but reading through this thread, I think I finally get what everybody's talking about.

In January, I woke up feeling like I was shivering violently inside ... nothing visible on the outside ... but very shaky and tremby inside, like all my organs were shivering in the cold. I panicked and ran to the doctor when the office opened, and it had stopped by the time I got to see the doctor, and they couldn't identify it.

A number of times this spring, I have awakened with that same sensation, and finally attributed it to my low body temperature (which normally runs about 95 to 96 degrees F instead of 98.6). When I wake up like that, I crank up the electric blanket and huddle underneath, and eventually it goes away. Wonder if it would go away without the heat, as it did the first time it happened.

Does this sound like the same thing you all are talking about? This started with me in January, right after I got out of the hospital following respiratory failure. Hasn't happened for a couple months.

And it was mainly inside my chest and upper trunk.
Beth

 

[rose]

This is a little late (and probably a mile short) but reading through this thread, I think I finally get what everybody's talking about.

In January, I woke up feeling like I was shivering violently inside ... nothing visible on the outside ... but very shaky and tremby inside, like all my organs were shivering in the cold. I panicked and ran to the doctor when the office opened, and it had stopped by the time I got to see the doctor, and they couldn't identify it.

A number of times this spring, I have awakened with that same sensation, and finally attributed it to my low body temperature (which normally runs about 95 to 96 degrees F instead of 98.6). When I wake up like that, I crank up the electric blanket and huddle underneath, and eventually it goes away. Wonder if it would go away without the heat, as it did the first time it happened.

Does this sound like the same thing you all are talking about? This started with me in January, right after I got out of the hospital following respiratory failure. Hasn't happened for a couple months.
Beth

Yes, but not as extreme. It does seem to be somewhat positional, in that I notice it almost always when either leaning back against something, or laying down. Raising my arms over my head, or extending them out would make me feel it sometimes too, After exercise I'd feel it (when flopped down on the couch) but not during the exercise. I know that I would have bet good money that there was something actually in my chest, but a CT scan showed there wasn't, and at that point the doctors just kept saying it was puzzling, must be autoimmune, etc etc.

 

[rose]

For Wright

Here is part of my reply (I have pasted it below) to Rose, who PM'd last night.

Vibratory sense is accomplished by certain types of receptors (vibratory receptors) that are subsequently "connected" to large, myelinated sensory nerves. It is generally accepted that ALS doesn't present with sensory symptoms, but that isn't always the case. Even Dr. Jean-Martin Charcot who first discovered ALS over 100 years ago noted sensory symptoms in a small percentage of patients. There was also a recent paper published out of Emory University that indicated that some ALS patients have some type of sensory symptom (the sensory symptoms were vast and usually only one type of sensory symptom was seen in a patient). They also noted that they were distal in nature (i.e. hands and feet) and if in a single limb, was focal in nature. It was a retrospective study, so the accuracy is a little suspect.
I also recall that some peripheral neuropathies and MS present with some type of "vibration feeling" that you might be describing. Basically it would be caused by damage to either the receptors or the sensory nerves that are responsible for feeling vibration and that Emory study did show damage to sensory nerves in a small percentage of ALS patients.

I hope that helps in some way.

I've been mulling this over, and this is what I'm wondering. What if this is not a sensory damage result? What if there are vibrations. The eye can't see them because they are vibrations. Just like we can't see a speaker vibrate, or a motor vibrate necessarily. And, as its inside the foot/hand/chest, rather than on the surface, we can't detect it by touch.

I think that I do vibrate, (but don't know this). Maybe we need a seismograph