Concerns of ALS with Twitching Muscles

I am a 19 year old male with no famiy history of ALS or any other major neurological disorder that I know of with the exception of a paralysis disease my cousin had. About 2 1/2 months ago I was sitting in class and my finger started twitching slowly. Since then I have twitched like crazy in every single muscle in my body almost. I was worried about Creutzfeldt-Jakob and now I'm terrified of ALS. First, I was feeling like my right leg was weak and atrophied, but the doctor said that it was because of nerve entrapment from driving so much. Then my twitching went down for like a couple of days. Then I some how came across ALS, and I have been horrified of this for some time now. In the past two weeks my twitches have been slow and rythymic (Sound familiar??) and I am worried now about Bulbar onset ALS for a couple of reasons... Tell me if this sounds familiar??

1. I was feeling my masseter muscle (Jaw) and I noticed that there is couple of small twitches that are there all day, I can't feel them without putting my hand on my jaw. They are usually elicited when I bite down really hard and then relax...This scares me the most.

2. I am having trouble swallowing, like if I swallow it feels like some crumbs or food particles don't go down completely.

3. My facial muscles are twitching as well (lips, etc.)

My tongue hasn't started as of yet, but when I stick it out it looks like there is a rippling movement and small ripples if I barely hold it up.

Someone tell me what to do. I have been to a neurologist and he won't do an EMG on me. He did a NCV that came back slightly abnormal and showed some irritation in my leg and wrist....

Please help...someone.

Hi Mimen,

First of all you need to relax. From what I can gather you are obviously an anxious person don't take this the wrong way but twitching is very common amongst anxious people. Most people on this site have been twitching for a very long time and from what i read none of them have moved on to a worse illness. You already went to your neuro which is a good thing. He examined you and he believes you don't need more tests. Why don't you believe him? I know its hard to reason yourself but worrying about it will only make your twitches worse. I know I've been there. try to give it a bit of time, don't think about it, go see friends, movies, have sex whatever... get your mind off the twitches. If in a few weeks if it gets worse go see your neuro or another doctor. Odds are, you will feel better if you relax. they might not go away, but it doesn't mean you're sick, it just means you're twitching

Mimen,

First of all. I have been twitching for 7 years. It is amplifed by stress and anxiety. I have twitched in my jaw, ear, scalp, lip, you name it. My twitching started in a finger as well - right after a very stressful time and spread throughout my body. There are lots of people on this board with abnormal NCV readings. Most of these are usually due to old injuries, repetitive stress like keyboarding, etc..The gold standard test for ALS is the EMG. Your neuro who has been trained to diagnose ALS, looked at you, probably did some basic strength tests, looked at your age, and decided this test was not even worth doing. Here are a few suggestions...

1. Read BFS in a nutshell post. It is the top of each forum

2. Read the Survey at the top of each forum.

3. Stop researching ALS or your medical condition all together. If the neuro gave you the all clear you are fine.

4. Read all of the posts to your question that are soon to follow - they will be very encouraging.

5. Do something about your anxiety. Anxiety is an awful cycle. Your finger started twitching. You probably looked it up on the Internet to see if you could "fix it". you read about all of these horrible diseases. Your mind freaked out and sent adrenaline and other stress hormones into the body non-stop. You are probably not sleeping well, have weak legs, more twitching, and other crazy symptoms becasue your body is in a high state of anxiety.

Mimen - If it makes you feel better you should ask your Neuro for an EMG. I know the results already but having the test may put your mind more at ease. I understand exactly how you feel right now having lived with this for 7 years. I hope you will find comfort in reading this site and am confident you will be living more like a 19 year old very very soon!

Best regards,


George

Thank you ... I will try. My neuro did not fully examine me with strength tests etc. He is a very reputable neurologist and one of the best published in the nation from what I hear. He said at 19 it is extremely rare to have ALS without familial involvement anyway.

BUT I JUST LOOKED at my tongue in the mirror, and when I protrude it and hold it there small muscles move around with me doing it??? Has anyone experienced this??

Yes, I don't think anyone can keep their tongue still when sticking it out. It moves around everywhere and you can see parts of it move. I will let you know that I am an expert in this area. In my darkest days - I had my wife, dad, mom, and 4 year old son all stick their tongues out as well. Guess what - they all moved and twitched!

I know that this is a strange question but do you have any hobbies or activites that you like to do?

Thank you so much. Yes I do have some hobbies like basketball and politics. I work for the Governor of Maryland and I can't seem to stop obsessing over this issue. I just read that BFS in a nutshell and that scared me just now. It said the ALS twitches were fine and soft, which is how my twitches in my jaw are, they are fine and I can't feel them without using my hand.

I am insane... seriously.

OK - here is what you do. Stop self-testing and looking at your tongue in the mirror, etc...It is only training your mind to be more and more aware of what your body is doing. I want you to go out after work and play a little hoop to divert your mind away from all of this (the exercise will help you sleep). I will even bet that if you really get into a good game you will forget about the twitching all together. After that - go get your favorite dinner and then sit down and watch game 7 tonight. Just try to fill your day with things you like to do and totally focus your mind on these activities. It may take a while but eventually your brain chemistry will return to its normal level and your symptoms will back off or go away all together.

Please stop self testing and keep off of the Medical sites.

By the way - you must be a Terps fan right?

George

I just had twitching in my thigh last week that I could not see but could feel with my hand. I have read many stories on this board from people who have had this too.

Haha..thank you hammer. I will try, but I am not a terps fan. I go to the Johns Hopkins University and am actually pre-med believe it or not. I love the WVU Mountaineers and Marshall University Herd, mainly because of my family going there for years.

I am a huge Terp fan but only smart enough to attend James Madison University(ha ha). Did you read the post about the Mayo Clinic Study? There were like 120 people in the study that presented with twitching only. None of them went on to develop ALS or any other MND. With ALS - weakness always comes first. As the muscles start to die off that is when the twitching begins usually in the later stages of the disease.

Enough talk about this - Spurs or Pistons tonight?

Try the diversion stuff for one week. If you don't feel better I have some other stuff for you to try, ok!

George

thanks for all the advice man. I think I'm going to go with the Pistons, but I think the Spurs will lead for most of the game. Chancey Billups will be a deciding factor. Peace.

I like the Billups call but I can't go against the Spurs.

Have a good night and try to relax.

George

Welcome to our board! You are lucky to have found our group here. Trust me--we all know exactly the stress you are experiencing. Take your time reading around this site, and you'll see many similarities that we all have. Also, just a quick note about BFS: the twitches can change all the time. Sometimes you'll feel buzzing, other times it's fast flickers, and other times slow rhythmic twitches. You can never peg it completely.

Don't ever look at your tongue again (at least to analyze it). I bet no one on the planet can hold their tongue completely still. In my worst worry days with BFS, I used to have my husband stick out his tongue in the mirror next to me, so I could compare.....yes, BFS makes us do crazy stuff like this

Also, with regards to Alonzo's BFS in a nutshell post, ALS fasics are typically so fine that often the patient doesn't notice them. Sometimes doctors use special lights to observe the twitches. Also, very often, ALS patients present first with weakness, and the fasics follow....and often it's the physician that must point out the fasics to the patient, not vice-versa.

All of your symtpoms sound like classic anxiety to me. Read up on generalized anxiety disorder (especially the physical symptoms).

Also, sounds like you have some nerve impingement issues which might explain the slightly abnormal NCV.

Do your reading on this site--and then go back to your neuro with a full list of questions. A great deal of us here have had our worries put to rest by having the EMG...even when our neuros said we didn't need it. Lots of our neuros did it specifically for our peace of mind...as it's the main 'proof positive' test that rules out the scary stuff--especially ALS.

If you feel the EMG would benefit your mindset, ask for it...and if your neuro denies you, then find a different neuro who is more sympathetic to the anxiety that accompanies our fasiculations. Some docs shrug us off because it's all benign...but thankfully most of us here have found docs and neuros who DO understand and will take some 'unnecessary' steps to help us overcome our anxiety.

Stay away from ALS websites. For now, treat your condition as BFS, and focus on that only. BFS and ALS are not connected in any way whatsoever. It's just unfortunate that tons of info about ALS comes up on the web when you search under 'muscle twitching'.

I hope you're worries are easing up by the minute.

Enjoy the game tonight!! Don't forget about Robert Horry. We're not so fond of that guy in my town (Sacramento)....he's a King killer

Amy

I appreciate your kind reply. As I mentioned, what worried me the most were the fine twitches that I can't feel on both of my jaw that seem to be increased when my body is going through stress, and EVERY time I bite down and then release. This same thing happens with my tongue. And they are pretty fine, and really hard to see, but easy to feel with my hand. I have muscle twitching in every single limb of ALL frequencies as well. I guess I am just a stressed out 19 year old. Thanks for all your all's comments.


Regards

EVeryone's tongues will twitch when stuck out. That's a fact. The correct way to check for tongue fascics is when the tongue is in the mouth. But don't do it. Stop the self testing, or it will increase you anxiety by 100%

To reassure you, a colleague of mine used to run an als support clinic. She told me that tongue fasciculations are unmissable as the tongue appears to undulate.