Extremely Concerned 19 year old

[nemo11]

Let me start from the beginning. I am a 19 year old student. About 3 1/2 months ago I started to get widespread twitching that eventually led into problems swallowing in the last 2 months. At first when I swallowed, food would merely get stuck in my throat (i.e. - tiny crumbs). But now, for some reason I think the left swallowing muscles in my neck are paralyzed, because I cannot feel them swallow when I eat or drink. It feels like food only goes down on the right. I also have been trying to get my words out fast and this leads to speech slowness sometimes and slurring.

Please answer these questions.

1. I have tongue fasciculations on the front after flexing my tongue and relaxing it, and some intermittent ones if I don't flex it, is this bad news?

2. If my throat was really paralyzed on the right, would I have more trouble then I am having now?

3. I had an EMG last week of 9 muscles in my legs and one arm. Would this be enough to say I don't have ALS??

4. How common is it for ALS to present in a 19-year-old with no family history?

5. I also think I am having trouble saying 'th' words like 'other.' Is this of any significance?

I have been examined by 2 Neurologists, and the one that conducted the EMG also examined me. Please tell me what else I should do. I am extremely scared.

[CCF-Neuro-M.D.-PW]

1) I'm not sure if you are really describing fasciculations without seeing them. Fasciculations in the absence of muscle wasting is unlikely to be from ALS. Widespread fasciculations from onset is more likely to be benign. Other more common causes of fasciculations include benign fasciculation syndrome, nerve root compression, a normal response to cold, exercise, certain medicatiosn like mestinion, and rarely some viral infections like Polio.

2) yes, perhaps your doctors should look in to some non-neurological causes of swallowing difficulties so that nothing is missed

3) You do not fulfil any diagnostic criteria for ALS as you describe, time will also provide more evidence, if you do not develop progressive symptoms or objective signs of motor neuron degeneration (it sounds like you do not)

4) very rare, although there is a juvenile form of ALS

5) If this is the only problem with your speech, then probably not, have your doctor or neurologist do a formal speech exam to be sure
Good luck

[nemo11]

The EMG was normal - No fasciculations or Fibrillations, etc.

[rocketsurgeon]

Sorry to hear you're having these problems.  I've had twitching for several years, including tongue twitches.  I've been to three different neurologists, let me give you a quick rundown of what I know:

1. If your EMG is normal, more than likely you're ok

2. The doctor would test more muscles if he thought you honestly had ALS.

3. Neurologists can tell an awful lot just by examining you, observing you, watching you walk, listening to your speech, etc and they are quickly alerted when they think something's wrong.

4. If you can feel your muscles twitch, it's more than likely not ALS style twitches.  People with ALS will twitch all over, and usually don't feel their twitches.

5. Weakness is usually the first symptom of ALS, not twitching.

6. ALS generally effects people who are much older than you, usually in their 50's.

7. Twitches can be anywhere, just because you have twitches on your tongue doesn't really mean anything.  

8. The swallowing problem that you are having may be anxiety.

These are just some tidbits from someone who has been freaked out about ALS many times in the past, has read several pieces of material, and has seen three specialists.  Ultimately, your doctor should be the one to determine what the problem is, so if the doctor doesn't think you have it, then you probably don't.  BTW...quit reading things on the internet about it!  It just makes it worse! I have the same problem!

[nemo11]

I just noticed a dent in my tongue that I am pretty sure was never there before. It is near the front where I get the tongue twitching. Thank you for all the good advice, I will try by best to adhere to it.

[cacklebunny]

Rocketsurgeon is very correct that a lot of what you've been experiencing AFTER the initial onset of your symptoms could be produced by anxiety.

Initially after I started having my own set of problems, I'm pretty sure I made matters worse by being overly anxious about what was happening to me.  You and I know that anxiety is a natural response, but when you're not aware of it, it can become overwhelming an actually produce more symptoms.

Anxiety also makes you "hyper-aware" of your body...the smallest twitch or bump on your skin can suddenly seem significant to you.  

My suggestion would be to try to relax about your symptoms and find solace in the fact that neurologists and EMG specialists have not found any sign of nerve damage.  One thing you should not do is a lot of Internet "research."  It usually makes matters worse.  If you read enough websites, you'll be convinced you have virtually every type of neurological disease out there.  

Having said that, I would continue to consult with a physician to try to uncover the cause of your initial symptoms.

[nemo11]

One more thing...Does tongue atrophy in Bulbar Palsy start with a 'dent' in tongue. And also I noticed like 10 minutes after I eat, if I try to cough out, there will be like thick mucous with what looks like tiny particles of food in it. Is this of any significance???? Please help me.

[Craig]

I'm sure the Doc will be along shortly, but you've also
gotten some excellent  advice from the responders. Nineteen you say?  I had but one mind at that age, and it certainly wasn't about  mortality. Take care, play hard.

[loured]

I have been twitching for 3 months now and had two nuero exams including an emg by my nuero (9 sticks calf, quad, hand, bicep
both sides and back of neck. i get a constant twitch in my palm that last for a day then goes away i also have pain in the palm below my thumb that shoots into my wrist sometimes. driving myself nuts. blood tests normal. dr says no sign of als. slightly brisk reflex in knee.

[pinkzebra80]

I have also experienced alot of your symptoms and after a year of testing and being diagnosed with MS they have found that I have Myasthenia Gravis. I would check into it! The medication I was given helped with swallowing, weakness, speech, and all other symptoms almost immediately.

[dead_love]

I've gone to the doctors but can't figure whats wrong with me. I started twitching after "hard on the hand exercises" like drawing alot,gutair,or badimoton my hand would shake. But lately my fingers have been twitching. And sometimes I have what I call twitching attacks where certain parts of my body just randomly twitch or shake and there getting worse everytime. I feel very fatigued at these times and I'm very cloudy in the head like I'm drugged. These attacks last from 20- 60 minutes and leave me complelty drained. And when I'm falling asleep but keep getting woken up or trying to wake up again an arm or leg will twitch. I have been checked for a hyperthorid and I don't have one. So I don't know what to do.....

[Montrey]

I'm eighteen and about six months ago i started twitching all over the place! no cramping or fatigue or anything but a bit of research made me conclude that i either had ms or als or some other catastrophic disease:). Since i'm still alive and have actually had periods where i was free from all kinds of twitching I've reevaluated my condition and have come to the conclusion that stress triggered it all. And it's true...whenever i'm under mental or physical distress the twitches switch back on at full power.

hopefully your condition is just as benign...besides, from all i've read ALS is rare and even more so in young people. Good luck!

[OPPR]

My husband’s problem started December 2004.  Both his hands were giving him trouble – numbness and tingling.  The GP thought tendonitis in both hands.  The problem became worse; numbness and tingling with jabbing needle pains.  The GP thought carpal tunnel.  The tests came back normal.  Then both feet started feeling numb and tingling.  We eventually saw a neurologist.  The arms developed quick single punch twitch (simultaneous).  I could also observe twitching in the chest at night while he was sleeping.  Neotriptyline was prescribed.  At each dose increase, from 10 to 20 to 30; severe twitching was observed in the hands, legs, neck.  Shakiness in hands seems to have persisted.  EMG (2), NCV (2), MRI, Xray and 10 various blood tests were done.  Nothing is coming out as abnormal – all within normal range.  The neurologist noted tongue twitching.  My husband has a hard time deciphering where a needle touching the skin anywhere on his arms or lower legs actually is.  There does appear to be some compression in three neck vertebrae but not enough for the neurologist to say it’s a problem.  My husband has always been slight of build – no upper body muscle development.  Lately, he can control his hand shakiness by voluntarily flexing and relaxing his muscles.  Also, he can now touch his index finger to his thumb without tremor.  Minor twitching is now present in his abdomen; slight tiny earthquakes.  My husband says he really can’t tell if its twitching because he sometimes feels like he’s twitching everywhere.  Hands are still tingling and numb.  Feet are also that way but to a somewhat lesser degree.  He is very tired.  What could be suspect?