widespread fasciculations and trembling of hands/wrists - what is this?

[Wilco123]

Hello everyone,


I have been experiencing fasciculations (and anxiousness) for almost nine months now. The fasciculations appear not in one particular spot but all over my body (feet, calves, thighs, shoulders, back, bottom). No other problems initially apart from a slight tremor in both hands and a sense of dyspnea during heavy exercise (running).

A month after the fasciculations started I went to a neuro. He did the usual tests (Babinsky etc). Everything was normal. EMG on arms and legs was also normal. Tremor didn’t appear worrisome he said, and the dyspnea sounded, if anything, more like something asthmatic, or might be stress-related. During these visits fasculations were absent. This due to the fact that the fascics present themselves mostly as one contraction at the time in a particular muscle, and then maybe an hour later another contraction. The fascics have been there everyday, but they appear in different muscles and with substantial time in between (this also makes it impossible for me to register the fascics on film – something my neuro asked for)).

Four months later again a visit to my neuro. Still fascics, still dyspnea while exercising. Now I also experienced problems talking (some letters just didn’ come out right – the l, the r, combinations of these letters -, like my tongue was stuck in one side of my mouth). Handtremor in these four months seemed to have dissapeared (or I stopped paying attention because of the speechproblem). Neuro again did some tests. Nothing appeared abnormal to him. Speech, tongue, reflexes. During the visit fasciculations were again absent. There are no clinical findings, the neuro said, and I see no fascics. Who says that you do have fascics anyway? I don’t see them, and you can’t present them on video.

Since then fascics and dyspnea continue (doesn’t seem to worsen though) and somehow the speechproblem dissapeared. The initial trembling reappeared though, now worse then before. It’s in both hands and it’s only in some positions: reading a paper when hold in front of me, stretching the fingers while bending the hands backwards, holding a phone to my ear for some time, bringing something to my mouth, but also when my head rests on my arm/hand the wrists seem to get ‘unstable’. The problem seems to be the wrists. There’s a sense of tiredness (in wrists) that goes with this. It’s as if the wrists lack endurance. Grip is firm though, apparently no sign of atrophy in hands/arms, almost no fascics also in hands/arms.

I don’t know what to make of this all. The anxiousness is cripling. Maybe someone will find the time to answer some of the questions that I have (before I go bother my neuro again):

1) what to make of this pattern of fascics? They are widespread and mostly it’s one short contraction in one muscle and then nothing for a long period before a fasciculation occurs in the same muscle (in some muscles the fasciculations may even be days apart). Is this a common pattern in MND?

2) Is it common/known that limb onset of MND is preceded for a prolonged time (8 months) by fasciculations that appear everywhere, but hardly ever in the region in which first signs of weakness surfaces (in my case: the wrists)?

3) Is it common/known in MND that weakness/trembling in the wrists come in both wrists at the same time or should the weakness appear in one wrist first and then migrate to the other?

4) Is it common/known that limb onset starts with trembling due to weakness of the wrists, while the hands themselves (grip) are not being effected?

5) should I get a second EMG considering that the first EMG was done directly at the onset of the fasciculations? In other words: is it possible that at an early stage of MND an EMG wouldn’t pick up abnormalities? And is it relevant in case of an EMG whether fascics occur while having the EMG? In case measurement of re/de-inneration is done only in unaffected muscles; would an EMG pick up abnormalities anyway?

Thank you for your time,

Wilco

 

[notme]

If you had bothered to red the sticky posts,which you obviously did not, you would have read that a clean EMG means no ALS. In ALS the problems would have shown up on the EMG. LMN signs are seen on E M G before you even have symptoms.

In UMN dominant issues, the neuro exam would have been abnormal.

The fact that you have both normal EMG and normal exam means no ALS.

You dyspnea while running is probably normal. Most get short of breath when they run, but if it gets severe your GP can order a lung function test for things like asthma

Good luck to you

 

[Wilco123]

Thanks for answering Notme.

I did read the sticky posts but didn't find an answer to my questions. That an EMG would always pick up LMN problems even before symptoms or fascics occur and that irregulraties would show regardless whether measurements are done in affected muscle of in not-affected muscle, is something I couldn't find. I was under the impression (also from elsewhere) that EMG as a definite diagnosis of MND in every phase and wherever measured is still object of (some) debate.

As for the other questions I posed concerning the pattern of fasciculations (time and place) and my wrists; I couldn't (and can't) find anything on this either.

Wilco

 

[curtrill]

Wilco,
I understand your frustrations but honestly in regards to ALS I believe you should be having one of the greatest celebrations of your life! It certainly doesn't sound like what is causing your symptoms. Nine months of occassional twitching that is widespread with no weakness is far from ALS. Your other symptoms come and go. ALS doesn't come and go. Without a miracle... It comes and stays!

 

[notme]

Fasciculations are usually harmless. It would be very unusual for two limbs to be affected at the same time. Most start with a finger or a hand or a foot. It is insidiously progressive. The muscles are no longer being triggered by the dead nerves and thus become paralyzed and atrophy.

EMG will show reinervation and denervation before you would even notice signs. At first, unaffected nerves try to compensate and send shoots off to the muscle to keep it working. That's why it would show up in a limb that may not even show any weakness yet...the body is still able to send the shoots early in the disease process.

Look for Wright's info on EMG. He is the resident expert here...and links to his EMG info used to be in the sticky posts.

 

[trfogey]

1) what to make of this pattern of fascics? They are widespread and mostly it’s one short contraction in one muscle and then nothing for a long period before a fasciculation occurs in the same muscle (in some muscles the fasciculations may even be days apart). Is this a common pattern in MND?

In early (subclinical) ALS/MND, the fasciculations are so small and so mild that they often go completely unnoticed by the patient. The fact that you do notice them, but show no signs of MND upon clinical examination points away from ALS/MND as their cause and points toward something like BFS or myokymia as their cause.

2) Is it common/known that limb onset of MND is preceded for a prolonged time (8 months) by fasciculations that appear everywhere, but hardly ever in the region in which first signs of weakness surfaces (in my case: the wrists)?

No, it isn't. Widespread and noticeable fasciculation is more common with conditions like BFS.

3) Is it common/known in MND that weakness/trembling in the wrists come in both wrists at the same time or should the weakness appear in one wrist first and then migrate to the other?

The typical pattern of limb onset ALS/MND is almost always assymmetrical. In the upper limbs, weakness usually begins in the fingers or thumb and progresses up the limb toward the shoulder. There is usually a time lag between onset in one arm and onset in the other -- usually weeks or months, but occasionally years.

4) Is it common/known that limb onset starts with trembling due to weakness of the wrists, while the hands themselves (grip) are not being effected?

No, with arm onset, the small muscles of the fingers and thumb are usually affected before the much larger muscles that control the wrist.

5) should I get a second EMG considering that the first EMG was done directly at the onset of the fasciculations? In other words: is it possible that at an early stage of MND an EMG wouldn’t pick up abnormalities? And is it relevant in case of an EMG whether fascics occur while having the EMG? In case measurement of re/de-inneration is done only in unaffected muscles; would an EMG pick up abnormalities anyway?

If a systematic process of lower motor neuron death is occurring, an EMG will detect it the results of it long before the damage is clinically observable.

Hope this helps.

 

[notme]

Thanks for answering Notme.

I did read the sticky posts but didn't find an answer to my questions. That an EMG would always pick up LMN problems even before symptoms or fascics occur and that irregulraties would show regardless whether measurements are done in affected muscle of in not-affected muscle, is something I couldn't find. I was under the impression (also from elsewhere) that EMG as a definite diagnosis of MND in every phase and wherever measured is still object of (some) debate.

As for the other questions I posed concerning the pattern of fasciculations (time and place) and my wrists; I couldn't (and can't) find anything on this either.

Wilco

Sorry. I am not usually snippy with folks over here. The EMG, from my reading posts by folks like trfogey and Wright and my own ALS neuro tell me that it will definitely pick up sub-clinical weakness. Clean EMG with what you see as LMN type symptoms means no MND. It does not mean something else can not be wrong, though.

Fasciculations happen to some people a lot. They can eve be anxiety driven. Personally, the doctor noticed the barely visible ones in my dead hand. I had not noticed or felt them.

I kind of thought you were basically wondering if an EMG can be done too early in ALS and with only LMN symptoms, the answer would be no.

Some have more UMN signs that send them to the doctor. Things like spascity which concern them. Those signs are clear of ALS as well IF the neuro exam is normal.

So, in essence, LMN always shows on EMG and UMN will show on clinical exam by a neurologist.

I had not even mentioned my leg issues to the ALS neuro because I was so concerned with the loss of use and atrophy in my hands (where my issues started) I freaked because I found myself unable to do simple things like push a button. It wasn't difficult, it was impossible.

It was only after a full neurological exam that I found out that after a little more than a year since onset that I also had UMN signs: spasticity, way too brisk reflexes, positive Babinski sign. I told her about the falling when she asked. I didn't even connect them because we can not test our own reflexes, and I thought the spasticity was just chronic spasms from back problems.

I have UMN and LMN signs in multiple regions now. What I do not have is a diagnosis of ALS. There are a lot of other possible causes to still be ruled out.

My point in telling you my history was to show that even with signs that definitely lead the doctor to suspect ALS, it is not a sure thing.

Zaphoon has a great line. It can only be ALS when it can not be anything else. Trfogey explained each of your questions much better than I ever could.

My own breathing issues are suspected to be due to weakness in my diaphragm but even that is not a sure thing...we just know my pulmonary function test shows I do not get enough air, so I am on oxygen.

It is very easy and normal to freak out a little when we experience strange things.

Have they ruled out trapped nerves? Do you work on computers a lot? This can cause various entrapments that would show up on NCV.

Weakness that comes and goes can be myasthenia gravis Or a multitude of other things.

 

[rmstudier]

In my particular case with progression slightly quicker than the median progression, I first noticed fasciculations about five months after first noticable weakness and in the weakened area only. The fasciculations are now body-wide as is weakness.

Not everyone progress similarly I'm certain, but that's my experience.

Hope this helps.

 

[Wilco123]

Thanks so much everyone for your precious time and for the reassuring answers.

Wilco