Hello

[Marlene3460]

Let me first start off by saying I pray for all those out there dealing with ALS and othe MND. I understand that you all are not here to give me a diagnoses just opinions/support. Also I am very familiar with ALS my father has it, and I also understand that only 10% of the cases are familial. Now to get to my point for the last 4 months I have been having some very ackward symptoms. It all began with twitching in thigh it then moved down to my foot. I have no clinical weakness in these areas. Then about 2 months ago I began having fasciculations in my tongue that I could not feel but see while the tongue was at rest. I also developed a twitching in my lips and cheeks and area above my lip. Withing the last week or so I developed this feeling of having something deep down in my throat and I am constantly clearing it but nothing ever comes up and the feeling doesn't diminish. Also my face lips cheeks and nose feel as though they are twitching, and I can feel it when i put my fingers on it and I have noticed new dips and grooves in tongue. I am somewhat frightened about the possibility of having bulbar I am waiting to get an app with a nuero. But my biggest concern is the facial and lip twitching with the cough. The twitching isn't constant but very frequent.

Anyway I thank you all in advance for any feedback, and hope my inquiries don't aggravate or find you at a bad time. God bless

 

[Alyoop]

Marlene, frequently facial twitching, especially lips, eyes etc is myokymia. The myokymia type twitches tent to be stronger than fasciculations. The fact that you can feel them strongly when touching your face, would attest to that.
What I would be concerned about, is your tongue twitching at rest, with dents. It could well be just benign twitching, but tongue twitching is less commonly benign. If they are constant, then that's when it is really a concern. If they stop and start, then it is less alarming.
I think rather than get opinions from forum members, you should get checked out by a neurologist. It will put your mind at ease. I can understand that with ALS in your family, it must be a constant worry. Get on to it ASAP, so your anxiety does not get out of control and cause your symptoms to intensify.

Aly

 

[Marlene3460]

Thank you very much for your reply Alyoop, and as far as the twitching I cannot see them in the facial area but feel them. Also with my tongue it isn't over the whole surface that the fasciculatioins are occurring it's in one specific area, and although it isn't a fast twitch it is slow and I try not to look at them but every time that I do it is present. And unfortunately I seen the same thing that said that most times tongue twitching is not benign. I actually seen one site that said it was a common indicator of ALS. And I am waiting to hear back from a neuro office so I can get an appointment it's very hard to get in there!

Marlene, frequently facial twitching, especially lips, eyes etc is myokymia. The myokymia type twitches tent to be stronger than fasciculations. The fact that you can feel them strongly when touching your face, would attest to that.
What I would be concerned about, is your tongue twitching at rest, with dents. It could well be just benign twitching, but tongue twitching is less commonly benign. If they are constant, then that's when it is really a concern. If they stop and start, then it is less alarming.
I think rather than get opinions from forum members, you should get checked out by a neurologist. It will put your mind at ease. I can understand that with ALS in your family, it must be a constant worry. Get on to it ASAP, so your anxiety does not get out of control and cause your symptoms to intensify.

Aly

 

[Alyoop]

I know it's all very distressing, especially in your situation, with your dad having ALS. Just be careful not to jump to any conclusions. Keep off the Internet info sites. I think my symptoms fitted into every neurological illness known to man . If I didn't have the symptoms before I read about a certain disorder, then I soon developed them. A anxiety causes things like tight throats and coughing. Twitching is made much worse as well. I am glad you are working towards a referral. There are people on this site who have tongue twitching but not ALS, so keep calm.
Best of luck
Aly

 

[Marlene3460]

Thank you very much for all your imput! And your completely right I am deff going to stay off those sites. And best of luck to you as well!

I know it's all very distressing, especially in your situation, with your dad having ALS. Just be careful not to jump to any conclusions. Keep off the Internet info sites. I think my symptoms fitted into every neurological illness known to man . If I didn't have the symptoms before I read about a certain disorder, then I soon developed them. A anxiety causes things like tight throats and coughing. Twitching is made much worse as well. I am glad you are working towards a referral. There are people on this site who have tongue twitching but not ALS, so keep calm.
Best of luck
Aly

 

[trfogey]

The typical first bulbar symptom of bulbar ALS onset is slurred speech, not tongue twitching, as most of our "bulbarians" here can -- and likely will -- tell you. The feeling of obstruction in your throat sounds very much like a condition known as globus, which is quite common in people who are under stress or suffering from anxiety.

Finally, as any dentist can tell you, dips and grooves in the tongue are very common and may appear and disappear with subtle changes in the position of the tongue and how the muscles in the tongue are contracted and relaxed. As long as you are able to move your tongue around inside your mouth as you always have, both freely and while chewing and otherwise manipulating food in your mouth, and not slurring words while speaking, it is unlikely that you are experiencing bulbar ALS symptoms.

The best thing you can do for yourself is to make an appointment with your family doctor and bring these concerns up with him or her. Also, stop looking up ALS symptoms on the Internet and then examining yourself to see if you have them. The descriptions of ALS symptoms that you will find on the Internet are so broad and so vague that I can guarantee that, if you are alive, you will find two of those symptoms on your body -- unexplained twitching and body parts that are different in size from one side of your body to the other.

That, as you have already discovered, is a very dark and frightening psychological path that you may find it difficult to turn away from when you need to. The quality of most Internet material on the symptoms and progression of early ALS is very poor -- misleading in many cases and utterly false in others, and the information that is accurate usually too vague and unfocused to be of any practical use for the average layperson.

Good luck to you.

 

[Marlene3460]

Trfogey you are completely right about the info being vague or completely wrong! Even I noticed certain things being said about ALS was completely wrong, but I am going to take everyones advice and not look up one more thing before I began to develop psycho symptoms! And I have officially received an appointment for June 6th so I should have some answers. And I will take your advice if I notice no slurring and can still move my tongue freely not a thing to worry about just trust my neuro to determine what's going on! Thank you very much for your thoughtful responses and I hope this day finds you in good health. Hugs!

 

[Blizna]

I have asked/mailed many top ALS specialist about tongue twitching - no one was able to say why it should be less commonly benign, just that it does not happen often so they have not usually seen it. Also there is no medical proof about it, just "rumours".
If you look at the aboutbfs.com site, there are quiet a lot of people with tongue fasciculations.
It is definitely not true that tongue fasciculations are definitely sign of MND - even later responses on MedHelp from neuros confirm that. They are however very specific clinical marker if there are associated issues like slurring etc. Then they are highly important.
Without associated signs, I hope you have benign fasciculations syndrome. I have it for 4 years. My tongue started nearly 9 months ago but its very infrequent (1 per day, maybe?).
However there are members even on this site with constant tongue twitching and no ALS - I can remember MichelleG.

 

[Marlene3460]

Thank you very much! I looked at the site and seen it, and I don't have any slurring ect so hopefully it is bfs! Thanks fir the info and hope

 

[Alyoop]

Blizna.
?1 random twitch in a tongue. maybe once a day. Is not having fasciculation. Its called a twitch. You need to be honest with people. So the secret is out. You do not have tongue fasciculations.

Marlene, I have been accused of scaring people with my attempt to help you. If I scared you then I am very sorry. As I said however. If you have tongue fasciculations, which are frequent and persistant small twitches in your tongue, Then you need to have a specialist check you out, INCASE they are not benign.

If you are having random stand alone twitches in your tongue,as Blizna is having,) less than 1 twitch per day ) then they are not fasciculations.

Aly

 

[Blizna]

Alyoop: My twitch was (and is) fasciculations, confirmed by neuromuscular specialist. The twitch is fasciculation if it happens to just one motor unit, I guess you pretty well know it. That doctor told me that the less frequent, the better (I agree with you) however fasciculation is still fasciculation, no matter how many times it occurs.
I am not neurologist for sure but there is no neurologist who is able to explain difference between tongue and calf fasciculation except that tongue ones are more rare. If you know the reason, please let me know.
My point was only to show that there are members and mainly on bfs site with tongue fasciculations (one I can think of even on EMG) which are benign. I have never said to do not investigate it..

 

[Marlene3460]

Alyoop no you didn't scare me this is exactly what I am searching for! I would rather know all the facts and unfortunately it isn't constant but deff more than one a day, and are visible but not felt. But I deeply appreciate all input!

 

[olly]

sorry aly but blizna is technically correct,if you look up the definition of fasciculation it means twitch................however having said that you are also correct aly in that an odd twitch would make it more likely to be bfs.
i have slurred speech and problems with articulation,i did used to look at my tongue a few years back and it did twitch persistantly while my tongue was at rest inside my mouth which i could not feel.........only first checked because i had a spasm type twitch on my left side of the tongue i could feel which eventually went away.....dont bother looking now.

i have to say after reading hundreds and hundreds of posts over the years its fairly obvious what is benign and what is sinister when it comes to fasiculations.
those with benign it bothers them more and they have no lmn signs with them,i also find they report it as a twitch..........where as in als its more of a rippling sometimes under the skin........described as worms.

 

[HelenL]

Marlene3460, I noticed in your original post something also about a weird feeling in your throat... have you had your thyroid checked? It can also cause problems with swallowing and that funny feeling in your throat. If not, I would recommend seeing your primary care doctor to have your thyroid looked at, and get a blood test. Now that's easily treated these days, I've been on thyroid meds for 17 years now. Good luck.

 

[trfogey]

sorry aly but blizna is technically correct,if you look up the definition of fasciculation it means twitch

Sorry, olly, but this is a very imprecise statement. A fasciculation is a twitch in a muscle, but it is a specific type of twitch. All fasciculations are twitches, but not all twitches are fasciculations. Just as a beagle is a dog, but not all dogs are beagles.

Fasciculation has a specific medical definition, which Blizna summed up very well -- a contraction in the muscle fibers controlled by one motor unit. The group of muscle fibers, called a fascicle, and the motor neuron which controls them make up the motor unit. Fasciculation is the process of contracting the fascicle of muscle fibers.

Most muscles in the body are composed of many fascicles (bundles) of muscle fibers of which are controlled by many motor neurons. That is what distinguishes fasciculation from other types of involuntary muscle contractions. Compared to a full contraction of the muscle, a fasciculation is a contraction of a piece of a muscle and, in most cases, a tiny piece of a muscle.

Unfortunately, the popular Internet medical sites dumb down the descriptions of symptoms of diseases like ALS so much that they actually misinform their readers, rather than inform them. The medically precise term "fasciculation" is replaced by the vague and generic term "muscle twitching". In that replacement, ALS panic is born.

We know the difference between twitches and fasciculations here. They are not interchangeable terms and we should never use them as such. If we continue to misuse the terms, we are adding to the confusion, the fear, and the panic, rather than being a place to get accurate information about these diseases.