I am back again

[tmarino]

Hello, I thought and hoped that I would not be back here. I was wrong and here I am again looking for some answers.

To briefly recap about 26 months ago I developed a twitch in the front right side of my tongue. It comes and goes. I sometimes can make it twitch. Sometimes it will twitch by it self. Some times I can feel it and it can be painful. After see a Neuro who did and EMG that included the tongue, oral surgeon, and my GP for well over a year they all said my tongue looked healthy and they were all sure that it was not ALS. They never could give me an answer on what it was. Some said that it was due to some dental work and tongue infection. They told me to be happy and go home and it maybe something I will have to live with for the rest of my life.

Well I went home happy to hear it was not ALS and was going to live with this twitch from time to time. About three months ago I began getting sharp pains in the left side of my lower lip. Then I started getting what felt like electric shocks in my tongue. Then the right side of my tongue started to twitch from time to time. Sometimes I can feel the twitch and sometimes I cannot and will see it in the mirror.

I went back to the oral surgeon who said that my tongue was healthy but the front of it was extremely irritated.

Today I saw the Neuro and told him what was going on. He looked at my tongue and said it was extremely quite. He tried to reassure me again saying that it is not ALS and if your tongue is constantly irritated along with everything your tongue has gone through that is why it is twitching.

His exact words to me that I have been seeing you for close to two years and if you had ALS I would being seeing alot of other symptoms. I said that the twitching had spread to the right side of my tongue and is this not progression? He looked at my wife and they both rolled their eyes.

I wish I had never google the words tongue twitching. What do you guys think?

Thank you for both your help and for putting up with a big baby.

 

[joelc]

It you had ALS you would be experiencing more symptoms than just your tongue.Twitching is not a sign of ALS. Rest comfortable.

 

[tmarino]

Thank you Joelc. I wish that I could get some doctor to tell me exactly what is wrong. I know it sounds crazy but I can not get it out of my head. It has really scared me again when the twitch went to the other side of my tongue. My GP is a personal friend of me and has told me he is 100 percent sure that I dont have ALS. In all the years we have been friends he has never said he has been 100 percent sure of anything. I don't want to jinx what he has told me.

I know it sounds stupid but some times I think they all might be wrong. I did take Lexapro for a good year and half it did two thing masked the problem and let me gain 50 pounds. My doctor told me I needed to man up and get off the Lexapro. He told me that I need to loose the 50 pounds in the next year.

I am sorry to bother you all with this but I am hoping that some one here would have the answer.

 

[crystalkk]

Did you go off the lexapro cold turkey?

 

[tmarino]

Crystal, I have been off it for about two months

 

[BethU]

tmarino ... As you must know from your Google research, as your friend the doctor told you, as your neuro told you, as we have tried to tell you, too ... this twitching on your tongue doesn't sound anything like ALS. ALS doesn't come and go. And Lexapro doesn't "mask" ALS.

So ... you have minor benign "symptoms" of nothing ... nobody can tell you "exactly" why you have that twitch any more than they can tell you exactly why one toe may be crooked and the rest not. It just is that way.

Your problem is not the twitch; your problem is the obsession. When you have an irrational obsession that intrudes on your enjoyment of life, it's time to talk to a counselor, figure out why you're obsessed ... and maybe also why you gained all that weight ... and put this behind you.

 

[tmarino]

Beth, thank you for your reply. I had come to terms with the twitching on the right side of my tongue. When the left side started to twitch it brought back all of fears. Like I said I should have never typed in tongue twitch on the Internet. What I had read that ALS is a progressive disease. So putting 1 and 1 together I got since the twitch is also now on the left side of my tongue that means progression.

I hope you can understand why I have become anxious again. Not knowing why something is happening can sometime lead you to the fear of the unknown.

 

[crystalkk]

Are your only symptoms in your tongue? I am not a dr but 26 months seems like a long time for it just to be in your tongue and not spread anywhere else and you still have full use of your tongue.. It doesn't sound like ALS to me have you had all your bloodwork and an mri of your brainstem repeated recently.

 

[tmarino]

Hi Crystal. According to both the Nero and GP my tongue looks normal. The Nero did a MIR just to shut me up and found nothing six or seven months ago. My wife and him like to kid me and say they found nothing in my head including a brain. My last physical was maybe 6 months ago complete work up everything is ok except for weight and cholestrol.