Reassuring Words for a Worried Charlie

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J

JennFiction

Well-known member
Hi Charlie,
Welcome to the board. Please try to relax, a negative EMG virtually rules out ALS! I know it's scary, we've all been there. You have at your disposal what is the probably the largest collection of people with BFS anywhere in the world. If you peruse the board you will find that there are several of us with tongue twitching. It is no more significant than twitching anywhere else. You can twitch anywhere there is muscle, anywhere! Probably the strangest is in the ear. If you read Aaron's piece on "BFS in a nutshell" I think it will answer alot of your questions. It is in this section at the top as a sticky. Again welcome!
 
relax Charlie...twitching is not an early indicator of ALS and the majority of ALS patients dont even notice their twitching. As long as you are not experiencing any real muscle weakness I think you can assume you are ok, couple this with the fact you have had a clean EMG id say you have a better chance of wining the lottery than having ALS.
 
Howdy!,

welcome to the board. To answer your question about tongue twitching, it's like Joe said, have (voluntary) muscle, will twitch. But that does seem to be the place that freaks people out the most. My tongue twitches whenever I take pseudoephedrine (a decongestant that is also a neurotransmitter!) But lots of people have complained of the same thing.
As for brisk reflexes, stress and anxiety can cause that. Many people have that and it's not necessarily pathogenic. Sustained clonus, on the other hand, would be bad. Brisk, that's nothing to worry about. Also, I have heard that disk problems can cause twitching...so maybe that's your problem right there: nerve compression of some kind.

You are fine. Believe your doctor and the EMG machine. Otherwise, you'll drive yourself batty with worry. And anxiety only makes you twitch more.

Wishing you calm,
Jen ;)
 
You guys are so good at almost instant response. I guess I am
worried about two things:
1. only having one leg be more reflexive as I have heard
this is a bad sign (no clonus, thank God). When I asked a friend of mine who is an internist, she asked me what the neuro said as if she did not want to answer me. My neuro did not comment, actually but my husband noticed it and said something to me after we left the office. All the neuro said was, " As of Nov. 7, 2003 you do NOT have ALS."
2. However, he did not diagnose me with BFS either. He suggested he would not repeat the EMG the first neuro did for at least 4 months.

Any ideas here? I am, like most of you have been, in the stage of desperation. Every time I look at my 3.5 year old I wonder if he will watch me......you know where this is going so I will spare myself. PLEASE help me with more feedback. You guys are a lifeline, noone else really understands the fear. SOme of my friends are beginning to think I am a hypochondriac, yet I wonder if the EMG was too soon to pick up anything? It was, incidentally, done on the very leg with the brisk reflexes just 3 weeks later. Maybe the nerves were overstimulated from the test??? I know of 4 people with extended family members who passed from ALS. It is not where I want my mind to keep going.

Oh, there goes the twitch in the leg..........

GOd Bless,

Charlie

P.S. are any of you in the Chicago metropolitan area? Just wondering if we could start and in-person support group. Any interest?
 
Charlie:

Hi. I started with my twitching aprrox. one month after a lower back/disc problem. My twitches and "sensations"occur off and on daily, some days better than others. In my case, I am convinced there is a connection to my spine. I had a clean Neuro exam, Brain MRI and EMG/Nerve tests approx three months in. Hang in there.

I only wish I had the Spine MRI!!!
Still twitching
 
An EMG can pick up denervation from ALS even before symptoms are noticable. You have NOTHING to worry about. Have you thought about therapy and/or anti-depressants?

Jen
 
Charlie,

Anxiety can cause brisk or abnormal reflexes. Relax! I know it's hard, but you gotta do it, somehow. Make sure you get plenty of sleep and maybe try meditation. It really helped me. BTW, my right leg jumps when examined. Neuro is not concerned.

Gary
 
It looks like lots of people have read these posts. Please feel free to send further encouragement. We can all support eachother....

:D) :D) :D) :D)
 
Ok guys, the sides of my tongue have cracks or lines like some people have down the middle. If I look in the mirror, the line on the side of my tongue is jagged. I feel like I am going to throw up. PLEASE, GIVE FEEDBACK AND TELL ME I AM NOT ALONE on this one!!!! Tell me this is not atrophy!
 
Charlie:

Hello! I have had a "scalloped" tongue since I started with BFS. Trust in your Dr.'s. and try not to stress. For some of us, I think this is just another BFS symptom. I have had a clean neuro exam, brain MRI and EMG/NCS. Hang in there !!!
 
Charlie / KEE KEE- you REALLY need to calm down.

If your tongue is bothering you that much, go and see a Doctor. No one here is qualified to tell you if your tongue is showing signs of atrophy.

You need to turn your computer off right now. Call a friend, go for a walk, get busy doing something!

Stop looking at your tongue in the mirror. You are only hurting yourself and your family.

Dale
 
Dale-

None of us here are qualified to diagnose BFS either, but we share our symptoms and what we see and feel. I give myself permission to use my lunch hour to "feel" because I am too busy at night to do much. I am not glued to a mirror or computer all day, in fact I have a Master's Degree and am an educator!!! WE ALL take comfort in "hearing" that someone else has these same symptoms and is "ok" like the poster before you. I realize you are trying to make a point, but if you don't have a wavy tongue, then you surely cannot comfort or criticize! :( :(
 
Another great example of how precious life really is. It truly is a gift. I'll say it again, visit a cancer ward - it is so humbling. Yes, in the broad spectrum, life is so minute. But it's your life. Don't waste it looking for reasons for the twitching. Invest that energy in something that really can make a difference - relationships with your families, friends and neighbours.

Dale
 

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