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ThatGuy

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Hey all, pleasure to meet you and hopefully you will be able to help me out with some guidance on what to do next. Ugh, where to start...

It was Summer 2008, was going to college and one night I happen to notice my arm shaking. Since then I've had an array of symptoms that annoy me but one that has stayed consistent is facialations. This thing first began in my calfs, now they happen everywhere. They will always turn up though right before I fall asleep at night. My tongue, lips, face, legs, arms anywhere.

I've also have had trouble swallowing during this time at night as well. Unlike the facialations though, this seems to have subsided on and off every few months. At night recently it seems to have returned, as I try to fall to sleep I feel like someone is trying to choke me. Sometimes needing to gasp for right when I'm about to fall asleep.

My balance is off. In my opinion it seems that my foot and calf have lost shape causing me to walk funny. Wearing shoes makes walking so much easier!

I find my speech to be slurred at time especially at night, pronouncing some letters with my tongue gets a little tough.

So here's my problem, if you were to see me on the street, you would think that I would be a pretty healthy looking guy. Sure you may think my speech is off sometimes, but otherwise I look like a healthy 22 year old.

Around a year ago, I could only afford an EMG (or ECG?) I forget the name, at the time though, I would say the symptoms were a little less active then they were now. Nevertheless, I passed fine.

During the last two years, I also have reoccurring instances with flashing lights while my eyes are closed as I try to fall asleep. So yea, I've been around enough doctors to know that this symptom isn't typical of ALS. It's actually the only thing that keeps me from completely losing it thinking I have ALS honestly!

So here are my questions,

So I've dealt with these symptoms for slightly more than two years now. IF I was dealing with ALS would I already have lost complete strength in a limb or something. I always pass the docs strength tests. They would have me squeeze their fingers and push my legs towards them. It would be nice to know how long ALS actually takes to take a major hold of one's life once symptoms start.

Another question I have is that my left foot and calf seem to have shrunk. But strength, wise I don't seem to have any problems. I recently took up swimming. My balance still is off though, and I blame it on my foot.

What do you guys think? Sounds like ALS? Maybe MS? Any response would be great, typing this has helped after having these problems build up for two years! Thanks!
 

sadiemae

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Yes, if it was ALS you would have lost strength.
 

joelc

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Please try to relax, you do not have ALS from what you describe your symptoms to be.
 

TedH5

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If you had ALS you would lose strength. Important to understand that no matter what is wrong only a Dr can give you an answer and not even the best Dr can diagnose you over the internet. It does not sound like ALS though.
 

sadiemae

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Examples of weakness: Unable to open a bottle of water. Unable to do one push up. Unable to climb stairs(or go down stairs) without assistance. Unable to cough up stuff in your throat.
 

brooksea

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weakness: unable to push the keys on the keyboard, except with one remaining halfway strong finger, being barely able to lift your arm to do so.
 

Lavender Lady

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So something is definately wrong obviously and you should persue finding out what it is. Typically after 2 years with ALS you would expect weakness, I had it after 2 months of symptoms and it has gotten increasingly worse. Good luck and I hope you get some answers.
 

Alyoop

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You definitely should see a neurologist. Sounds nothing like als, but many other neurological illnesses can cause things like flashing lights etc. It would put your mind at rest. The breathing thing at night is probably anxiety, which is why it cones and goes. I get it every now and then, and it's scary. I just reassure myself that I will be alive in the morning, and I wake up fine!
If you have to pay a lot for the dr, make sure you get some recommendations before you go.
 

manwithaplan

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sounds like ms. lots of tests and 1 year to diagnosis. lucky bastard.
tony
 

Zaphoon

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I had a friend once that experienced similar symptoms (flashing lights while eyes were shut and intermittent muscle weakness). He claimed he had been abducted by aliens and was certain they had implanted a device of some sort into his nostrils.

I laughed until I cried! Unfortunately, this hurt his feelings as he was quite serious. That was a while back and he's still not speaking to me.

I guess my suggesting he put tin foil over his head to avoid further detection by the aliens didn't help.

Anyway, I digress...

I've not met anyone with ALS that experienced Flashing Light Syndrome (FLS).
 

ThatGuy

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Wow the replies are great! Thanks so much! I definitely plan of pursuing my symptoms unfortunately I can't afford anything at the moment and have to wait till the new year so my insurance switches over. I have a few questions, if someone doesn't mind answering, I would really appreciate it.

My throat issues continue and swallowing is an issue on and off all day. I'll either will have a tingling sensation in my throat or it will feel as if something just jammed the thing up and being able to swallow is rough. I don't choke when I eat, but every so often I'll have a light cough cause I assume I didn't swallow all the way.

This may be related or unrelated, but for some time now I'll have little white food particles come out of my mouth. As if they didn't make it down the pipe, I just spit them out.

Like my throat I will also experience tingling/numb feeling on my tongue. Besides that my tongue also seems to twitch on and off.
The side of my mouth also have this on and off drooping feeling. As if my skin is being pulled down.

Lastly, I mentioned in the previous post that I experience no weakness. I forgot to mention for some time now my range of motion for my left upper thigh seems to be weighted down. Can I walk? Yes, as well as I use too? No. The weak thigh is on the same side as my off balance foot.

Do you guys experience tingling in your throat or tongue? Does it sound like bulbar? ALS? Again, thanks so much for your time and knowledge.
 

Daphne

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To ThatGuy and anyone else who is worried about symptoms:

The alien story guy caught my attention. I totally understand how people react to hearing about symptoms (healthy skepticism), and so I try not to tell people about mine.

Probably I am a "special" case, or perhaps a "developing" hypochondriac, but I had never ever worried about my health until 6 months after my older brother received his diagnosed of ALS. Like many of you, I have developed tingling, twitching, cramping, and fatigue symptoms, and the most recent bothersome one is my inability to speak clearly -- I have suddenly developed a lisp. This is bad as I make a living as a college teacher, lecturing all day long. My symptoms started in May and have not abated. Xanex did nothing. Giving up caffeine has helped a bit. My doctor has given me blood tests and an ultrasound to rule out hyperthyroidism. They have taken me off the beta blockers I've been on for a few years (high blood pressure runs in my family; I am 44 and pre-hypertensive) in the hopes that this will get rid of my symptoms (sometimes beta blockers turn toxic).

In my heart, I think it's just stress and anxiety. I hope it is.

On the other hand, my brother claims he felt "wrong" for seven years before the "real" ALS symptoms came on. Muscle cramping was his biggest symptom. He didn't have the twitching. What this tells me is to be sympathetic with those who are experiencing random symptoms that span years. Sometimes they DO turn out to be ALS. It's not what anyone wants to hear, and I'm sorry to say it. I read that if one family member gets ALS, then you're automatically at higher risk for getting it.

I wish there was a way that this forum could track posters and follow up on them. I would like to know how many of them later went on to develop full-blown ALS.

On another thread, it was debated whether there was any value in getting the genetic testing. I know what the value of it would be: a negative result. Doesn't mean squat, I know, because FALS doesn't always show up in the genes. But it would be of value to me the same way this forum is of value to me: a comfort. Hope.

So please have patience with those of us who are still in limbo. I am trying to develop a zen attitude about it, and to stay positive and grateful for my blessings. But whenever I get hopeful and forget about ALS, invariable, some muscle twitches will remind me of it.

Thanks for this forum. You mean a lot to me.
 
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