Sixteen and Scared

[whydothegood...]

For the past few days, I've had pretty awful right arm muscle spasms. They usually start as a slight twitch in my hand but quickly progress to the point that my entire arm is jerking uncontrollably. It is quite debilitating, given that I'm in high school and am expected to take notes.

I went to the ER four days ago when one 'attack' lasted more than 16 hours (stopping only when the nurses gave me sleep meds). Even the veteran docs were baffled at my "neurotic fish out of water" hand. I spent two nights in the hospital and had an MRI, EEG, blood tests, and urine analysis - everything came back normal. The docs ruled out epilepsy, thyroid or hormone problems, stress, infections, as well as most autoimmune diseases and cancers. One of the few things not ruled out: ALS.

Some backstory: I have had muscles twitches and slight spasms in my right arm and leg for years, but I never thought anything of it -- until now. In addition, I have noticed that over the last six or so months, I've been tripping and/or falling more often (I am naturally clumsy, but this feels different). My grandpa was diagnosed with ALS at age 49 (he died two years later in am unrelated car accident), so I also have a familial link to this disease.

Please help!

 

[lgelb]

Sixteen,
Are you scheduled for EMG/NCV testing? What is the doc's plan for diagnosing you?
I don't think we have much to say, given your age, at this point.

 

[whydothegood...]

I figured I should post more in depth:

I'm sixteen years old, a former super competitive athlete, and a junior in high school.

My symptoms:
Muscle weakness -- I used to be able to run up and down a soccer field for 90 minutes; now I can't make it up a flight of stairs without breathing heavily and feeling like my legs are going to give out. Also, I can't jump off the ground at all... :/
Muscle twitching and spasms (see my previous post)
Jaw pain (I doubt this is related, though)
Balance problems (also see above)

I'm not in any pain. My arm is a little sore, but it has been jerking around for 11 hours without stopping. As for muscle atrophy, my right arm is a lot weaker than my left (even though I'm right-handed) but this could be a boatload of different things.

I have an appointment with a neurologist tomorrow night, and then I'll have an EMG. I'm sorry if it seems like I'm wasting people's time, that is, on no way, my intention. I'm worried because most of the the other diseases my symptoms point to have been ruled out.

Thank you.

 

[whydothegood...]

Sixteen,
Are you scheduled for EMG/NCV testing? What is the doc's plan for diagnosing you?
I don't think we have much to say, given your age, at this point.

Thank you so much for replying so quickly! I really appreciate it

To answer your questions: my neurologist is scheduling an EMG soon, and I have an appointment with him tomorrow, so I should know more by then.

I know the odds of my having ALS are slim to none -- trust me, I get that. Even with my family history, it's extremely unlikely.

I guess I'm just wanting to hear opinions from people who have ALS or know people with it.

Thank you again!

 

[Nikki J]

There are so many weird neurological things that there are sure to be many things that this can be. Your symptoms seem to encompass legs and an arm plus a couple that are as you say definitely not ALS like and that out of control arm does not sound like ALS to me. If your grandfather is your only ALS relative his would be considered sporadic which would mean you are at no increased risk. Is your parent on that side alive and well? They would have had to pass along any genetic defect
Good luck with your appointment

 

[whydothegood...]

Hi Nikki,

Thanks for writing back!

The answer to your question:
My paternal grandfather and great-grandfather are the only relatives I know about. My dad is a healthy (as far as I know -- we don't speak much) 56-year-old. I don't know if he'll get this disease later in his life, but, so far, he does not have ALS.

Thank you so much for your reassurance, especially about my crazy arm. I really appreciate it! I'm sure I'm just being a hypochondriac! I'll add my EMG results when I know them, but, otherwise, I'll stay out of your hair!

 

[Nikki J]

I am sorry that you lost 2 relatives. That stinks. It is good that your dad is older than his father and is still unaffected so hopefully did not get the gene though not a guarantee and if he does not have it, neither do you! Again good luck