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ConcernedTeen

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Mar 27, 2018
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Learn about ALS
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US
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GA
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Somewhere
Hello everyone. I would first like to say that all of you who contribute to this forum are incredibely strong and many people, such as me, tremendously value your efforts.

I have been lurking this forum for the past two-three weeks. I am extremely concerned about what is going on with my body right now. Let me explain:

Around three-four weeks ago, I began to experience random twitching sensations in both my legs. I have had twitching in my eyes before and attributed it to other reasons such as lack of sleep (last semester was busy for me) so I brushed it off. After a few days, the twitching did not seem to go away, it kept going. So then, like many others, I turned to google. Immediately "ALS" popped up and I became concerned. However, I did some more searching and came across BFS and hoped it was just that.

Then, I started feeling a weakness in my right leg. It feels heavier than my left leg when I pick it up. In my band class I tap my foot along to the music and my right foot seems to tire more easily than my left foot. This became a big concern to me. I told my dad about my symptoms and he immediately took me to the doctor to run some blood tests. Everything came back normal. It should also be noted that I never drink coffee and drink soda maybe once or twice a week. The symptoms continued. My uncle, who is a doctor, told my dad to get me an MRI. It came back normal.

Then, my regular doctor referred me to a nuerologist. She conducted a brief exam where she had me push and pull on her, walk in front of her, and tested my reflexes. She said everything seemed normal exept my reflexes were brisk. She said this most likely meant nothing as they were bilateral and could be attributed to my young age and nervousness of the exam as well. She suspected BFS but ordered an EMG for the next week to make sure there was nothing else going on.

Now, I've done my research on BFS and apparently it only affects voluntary muscle groups. This concerns me very much. I get twitching everywhere, inside and out. I feel it in my legs, my arms, my face, and my torso throughout the day. It is completey random and I have no control over it. This makes me suspicious of another underlying issue. I feel it on my cheek as a type this right now.

Yesterday, I had the EMG. The doctor conducted the test with my dad also in the room. The checked me right leg, back, neck, and right arm. This is because I told her I get significantly more twitching on my right side. At the end of the test, she said "I saw nothing on this test that would indicate a motor neuron disease". At the time I was relieved, and so was my father. It should be noted that a few days prior to the exam, I noticed my right (weak) leg is smaller than my left. I have never noticed this before in my life. I freaked out when I saw the difference. My feet look symetrical to me as of now, but my calves and under-thigh on my right leg are undeniably smaller than the left. I told my neurologist and she measured and confirmed the size difference but said it was "insignificant". If it is insignifacant then why am I feeling weakness? This weakness has been lingering for weeks now and has not gone away whatsoever. When I try to balance on one leg, it is much easier to do so on my left(strong) leg than my right. The difference is undeniable.

After the test, I tried to push the fears out of my mind and went back to focusing on school, as someone my age should. I am an 18 year old high school senior, by the way. But the twitching persists. I have no idea what to do. I am very scared. 3 years ago my mom passed away due to cancer so I try not to worry my dad too much. He is still dealing with that loss. I do not want to stress him additionally.

Also, as of three weeks ago, I have developed a slight tremor in both my hands when holding my phone. I noticed this because I was taking a selfie and noticed the image of myself was consistently shaking, every so slightly. I have never noticed this once in my life before. This happens with both hands. Also, when holding my phone in my hand for not even that long, my arms start to burn as if I've been working out hard. This also worries me a lot! More so in my right arm than left. Also, my right thumb twitched today for the first time in class and my heart sunk when it happened. I am just so scared now.

I understand this disease is extremely rare, especially at my age, but I cannot help but wonder - why do I feel this way? This semester, I got accepted into my top choice for University, finally asked out the girl I liked to prom, and was starting to enjoy my final moments of high school. Every since these symptoms popped up, I find it very hard to focus on those other things.

I appreciate any advice or insight anyone on this forum would like to give. Thank you.
 
Teen,

First, congrats on what sounds like an awesome last spring in HS. Enjoy! Seriously.

I can't answer why you started twitching in the first place. In a lot of ways, that's the luck of the draw. As for your concern that BFS affects voluntary muscles, that's true, but all the muscles you've mentioned are.

A lot of us twitch when we are tired, dehydrated, stressed, overdo it, etc. Unfortunately, twitching is one of those things that once you notice a little of it, it can turn into a lot. The mind is very powerful.

Nor can I answer why one of your legs seems smaller than the other, except to say, you can't be sure that it hasn't always been that way, or been that way for a while and maybe is now a bit more, and again, many of us are uneven in that way and even progressively so. For example, at the base, one of my thumbs is double the size of the other. I can't say when/how that happened, and as another anomaly, my right hand has always been stronger in recent years (though I'm left-handed), but that's the way it is.

I can't answer why that leg feels harder to tap, either, except to suggest that you check your mattress and chairs for anything that is making you cross one leg, slump a little, etc., which can contribute to that feeling, as can simple things like how you hold your laptop or phone.

I think you can guess what I am going to say about your arms.

What I can say is that a clean EMG of limbs that "feel different" + a negative MRI argue against ALS, MS, muscular dystrophy, brain tumors and a host of other possibilities.

Is there a real problem? IDK but it's seemingly not anything that involves your muscles or nerves as a whole. Unless/until you flat out can't do something that you used to be able to do, I'd live these once-in-a-lifetime months to the fullest, as if the concerns and tests never happened, and see how far that takes you.

Best,
Laurie
 
Thank you for your reply, Laurie.

I am just worried. When my mom passed away, I was so sad that she would never be able to see me graduate high school, go to university, or get married. Now I am worried if anyone else will be able to see those things also. I want to forget but I cannot when I constantly feel weak and have twitches. I've studied so hard to get accepted into my University and now I can't even relax. This makes me so frustrated! Why is this happening to me? I want to move on with my life.
 
Teen, you're at a place where there is a HUGE change in your life. Whether you are facing it as a 100% physically fit person, or also having to deal with health concerns along with such a transition, you really could benefit from counseling. I am the parent of an 18 year old who is pretty well adjusted, healthy and confident- and they are terrified. A therapist has helped them immensely by providing them with some tools to deal with anxiety and to figure out where the fear is coming from.

Whether you are physically healthy or not, a therapist can help walk you through your concerns and maybe provide some solid advice about how to mitigate stress while you continue to work with your doctor to figure out the cause of your physical symptoms.
 
ShiftKicker,

Typically I am not a very stressed out person. I am very easy going and get along with my friends well. I would not like to attend counseling because that only supports the argument that something is truly wrong with me right now. I have so many plans. So many things to do. So many places I want to see. I pray that I can enjoy the luxury of growing old one day. Right now it is hard to think about these things without worrying.
 
Teen,

Counseling helps you cope with fear and worry. I would take Shiftkicker's advice.
 
Maybe you all are right. But that's something I'd not like to think about now. I have a follow-up with nuero in 6 weeks. We'll see what happens. I hope I will be able to move on and experience my youth to the fullest...
 
I would take things one day at a time. However, set goals, plan on a normal life, take steps to keep yourself healthy. Chances are excellent you’ll be able to achieve your goals and live a happy, productive life.
 
Dear Teen,

Just one more comment. Try your hardest to stay off this board. Reading posts here would be enough to cause anyone worry.

Enjoy each day.
 
I just took my AP Physics practice exam at school and my hand was shaking while I was holding my pencil. Every day I go to school and look around and see all my friends who I have known for 7-12 years, excited to graduate and move on with their lives. I wish - so strongly - that I could say the same. I am only scared about the future now. I've noticed when I click my mouse on the computer it now requires the movement of my entire index finger instead of just the tip, like with my left hand. What if things just keep getting worse? The prom is over 3 weeks away.. what will change by then? This is not fair. I already lost my mom. Why does this have to happen. I just felt a jerk on the right side of my chest. Ok class is about to end. I don't have anymore time to type anything else.
 
I don’t think for one instant you have ALS. It does not sound like it.

You have been advised by several wise members to consider counseling because they believe it is the best way to help. You seem resistant. If you won’t do that go to your pcp and discuss honestly.

When you find down the road that you have worried unnecessarily you will regret the time lost.

I am sorry about your mom. It is very difficult to lose a parent so young. That alone is a reason for counseling. My niece , who lost her mom to FALS, was younger than you. She had counseling before during and after
 
Thank you for the advice everyone. And thanks for listening to my concerns. I'm at a loss right now. I used to be able to only get 6 hours of sleep and have enough energy for the whole day and to study into the night. Past few days I've been making sure to get 8 hours of sleep and come home much more tired to usual. My body continues to twitch. According to my neuro there was nothing bad in my EMG. So confused/nervous right now. My heart goes out to those affected by this cruel disease. It is good that NurOwn is in it's phase 3 trial and will hopefully be available within 2 years. The medication shows much promise. It may have the potential to save thousands of lives. Most importantly, it offers hope.
 
Teen,

This forum is stressing you out. Please understand that the people who take the time to respond to your posts have ALS, take care of those with ALS or have lost someone, maybe more, to ALS. Some of the people here are typing using their eyes because they are paralyzed. Please read what we have asked of you.

We have given you our best advice and opinion. We can't keep repeating ourselves. It is not fair to our moderators.

I strongly suggest counseling. You have your whole life ahead of you and you need to find a way to treat your anxiety.

I'm so very sorry you lost your mom but there are moms on here who are trying to make each day count with their children.

Just give counseling a shot. It's ok to see your GP and tell her/him everything that is worrying you, too.

I was a college professor. I had many students who got so stressed out that their physical health suffered. I don't want that for you. I just don't think this forum is the place you should be to get the help you need.
 
Teen-

With all the people recommending you see a counselor/therapist, and your arguing that you don't need one- I would like to point out you are using this forum as therapy and a place to have people reassure and sooth your anxiety. I'll be straight- this is not the place for you.

One, you don't have ALS.
Two, you need to see a counselor to help you with your worries and to help you through your grief.
Three, the people here should not be expected to operate as your therapists.
Four, you are making your anxiety worse by being here.

This is no longer up for discussion. The ONLY time you should visit here and post is to report that you have seen a doctor and asked for help managing what appears to be a life limiting case of anxiety. Anything other than that will net you a thread closure and removal of posting privileges. Your presence here is harmful to your mental health and preventing you from getting actual medical help.
 
Deep down, I know you are all right. It is best for me to leave this forum. You all probably think I'm crazy for being here, anyway. But no one else will believe me/want to believe me when I say these things. I cannot ask for counseling because my dad will think something is wrong with me again. I do not want to worry him. I think I will try to talk to some of my close friends about this. I actually asked one of my friends if she wanted to talk over dinner and we will this week. Oh man, I was just starting to feel better as I was typing this then my left arm started twitching AGAIN. THIS IS NOT FAIR. Ok, I am done. I will try to stop posting on this site. Hopefully I will never have to come back. I don't like my odds, though.
 
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