Do I have early onset ALS?

[chanman]

Hi all, I didn't know where else to turn to so I thought I could get some guidance here. So here it goes..

First of all let me begin by giving a little background. I am currently a 19 year old college student. I know that ALS rarely occurs in someone my age, but my situation is such that I can't help but think that I could be one of the rare, early-onset cases. It all began about five to six months ago. I first noticed twitches, especially in my toes, both toes but primarily my left big toe. Shortly thereafter I began noticing severe cramping in my calves. I noticed I could easily get cramps in my calves if I flexed them. I made an appointment with my family doctor who said I was too anxious but he got me an appointment with a neuro anyway. I saw the neuro who noticed several things: I had a noticeable loss of sensation in my feet and noticeable high arches. So she suggested Charcot Marie Tooth disease but also ordered an EMG. She explained to me however that she found no weakness. The EMG came back abnormal and she told be I had noticeably abnormal sensory AND motor nerve results. I also did blood work and everything came back normal. She again suggested this CMT. But it is a genetic disease that must be inherited and no one in my family has anything resembling the problems I have had (with the exception of my fathers high arches). I have asked repeatedly about ALS and about how my symptoms seem to be similar. To date those include: twitches (they occur throughout my body, but primarily in my toes, with one toes worse than the other), cramping in calves and hands (both sides), and noticeably small ankles and calves, but I have had significantly skinny ankles and calves for several years. Also, I have notices poor balance and I tend to trip over things.

I know that my symptoms can be attributed to many other things, but pretty much everything seems to have been ruled out excepts for this CMT, which I don't see how I could have. I ask about ALS, but my neuro seems to ignor these concerns. I haven't gotten a second opinion, and I'm afraid that another neuro might take my symptoms to be more ominous..

So... am I crazy or could my symptoms truly be ALS even though I am only 19? Should I see a second neuro, or trust my current neuro is right for giving no attention to ALS? I'm sorry if I've broken any etiquette in this post but its my first one..

 

[Nuts]

My husband has ALS and my sister has CMT. She has had it for decades and is the only one in our family with it. One leg is noticably thinner than the other and she stumbles easily. PLEASE trust your doctor. You CAN be the only one diagnosed with it, and it will cause balance problems. If you had ALS that would be very clear from the EMG (abnormal does not only mean ALS). Relax. You will need to be careful, but be thankful that CMT is not terminal.

 

[Atsugi]

Thanks for the details, Chanman. You gave a pretty complete accounting of your symptoms. You don't have ALS, not by any stretch of the imagination. Your doctor is right to blow off the idea.

First, twitching can be anything, or nothing at all. It is so common, it is not diagnostic of anything.
Second, cramping is not a first sign of ALS. A cramp is when a muscle contracts painfully. However, in ALS, the muscles CANNOT contract, and they feel no pain.
Third, balance is not affected by ALS.
Clinical weakness--the total inability to contract a muscle--is totally necessary to be diagnosed with ALS. That's the first sign; you just suddenly cannot lift a foot, for example. There is no feeling associated with this weakness.

Frankly, I have to ask: why are you seeing a doctor? Twitches, cramps, high arches; these are totally normal things. From what you describe, you have nothing pathologically wrong with you. Is your employment affected, studies, love life, pain? Can you do the normal activities of daily living? I don't see any reason to proceed with a doctor.

Keep in mind that we all are different, and we all have funky things going on. I fart and burp a lot. Doctors call it IBS. But just because they can name a condition doesn't mean the condition is "pathological." If it's not affecting your life terribly, then it's probably just a quirk. It's just the way you are.

In any case, whether you have a medical problem or not, I can assure you it's not ALS.