Frightened that I have ALS

[Ande]

I know I'm 17 years old and it's very rare for me to have ALS on this age, but I still hope you hear me out on this.

This all started with muscle twitching about 4 weeks ago. I felt it in my legs and in my back which was really weird feeling. I also noticed that when I was standing still my legs were kinda shaking, and I got these weird "whole body twitches" that twitched my almost whole body.

Well I really didn't think much of it, I just let it slip and continue to live my normal life until two days ago. I tried to write with pencil and it felt significantly harder than before. Don't get me wrong I still can write with pencil but it just feels hard.

And yesterday things began to take even scarier turn. I started to feel that my right hand is weaker than my left hand. (Im right handed). For example If I tried to rise my right hand up I could do it but I had to put much more effort to it than with my left hand. It just feels so weak.

I noticed same thing with my right leg. I can still walk but it feels like my right leg is slowing my walking down alot. It takes like two times more effort to rise right leg than left, when walking. It's kinda heavy weight without weeling heavy. Hard to explain, Im sorry if I confuse you guys.

I was so scared about all of this that I couldn't sleep at all last night. I was panicing and thinking that I cant die this young and have so horrible disease.

Well thing didn't take better turn at all today. I tried to sing, because I like to sing while I listen to music, but I noticed that I really can't do that anymore. My voice sounds very nervous and I have hard time pronouncing "S" "CH" "L" "R". For me it sounds like slurred speech but other people haven't pointed out anything.

I'm most worried about my right arm and leg. Right arm feels heavy and harder to lift than left. Right leg is harder to lift when walking.

I have been also suffering from constant tension headache for two years now, and I don't know if this has nothing to do with it, but I just wanted to point that out. I hope this is just really bad anxiety and stress because I used to fear that I have brain tumor because of the tension headaches. I had brain MRI taken and it came back clean, luckily.

I tested my knee jerk reflex today and noticed that my right food propably haves hyperreflexia, because it launched like a rocket when I popped it a little bit.

So here are all of my symptoms and I know they can all be sign of severe stress and anxiety but I still wanna hear your opinions. Im also seeing doctor in two days for this. Just for my own peace of mind.

I'm sorry if for spelling errors cause I have little bit hard time typing with my right hand on keyboard. This post can be very weird and very unclear but Im almost scared to death about ALS so it's why.

 

[KarenNWendyn]

Ande, I’m happy to tell you that you don’t have ALS.

Please read this if you have not already done so:

https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

First of all, ALS does not come on as rapidly as you’ve described and affecting so many areas in such a short time. You also report twitching and feeling weak. Feeling weak is not the same thing as true weakness. Twitching is common, nonspecific, and meaningless in the absence of muscle function failure. ALS is about failing, not feeling.

Only a physician can accurately test strength and reflexes. I’m glad you’re seeing your doctor very soon.

You do seem to have a lot of anxiety. Anxiety can make many physical symptoms worse, including twitching. Part of your care should be focused on getting help for your anxiety.


Best of luck with your doctor’s appointment.

 

[lgelb]

Hi Ande,

I get that you're scared but I don't think you have anything to worry about. I am sure the doctor will reassure you. I don't know what medication if any you take to treat or prevent the headaches, but that might be something to discuss (reconsidering what you do/do not take), and it's always good to make sure your pulse and blood pressure are within a normal range.

Whenever I hear about twitching all over, I think of sleep, stress, diet and hydration as areas that you can think about, so you might want to make a list of questions to ask the doctor.

Best,
Laurie

 

[KarenNWendyn]

In addition to what Laurie suggests, also ask the doctor about checking your thyroid. Thyroid problems are much, much more common in your age group than ALS and can cause many of the symptoms you mentioned.

 

[Ande]

Thank you for the response Karen and Laurie. I will update this thread tomorrow after my appointment with neurologist.

 

[Ande]

Hello everyone, again.

So I had my appointment with neurologist today. Im happy to tell you that I don't have ALS. He tested my strength and reflexes and everything was okay. I don't have hyperreflexia or noticeable strength issues in my right hand or leg.

He said that just by my age, it's isn't really possible to have ALS.
He has been working 20 years in ALS clinic and he hasn't seen anyone below 38 years old with ALS. Most people who get this are 60-70 years old.

He didn't see any point to send me to EMG or bloodtests/MRI.



Anton

 

[ReginaS]

Congratulations!!!

 

[Nikki J]

Thanks for returning to report!
Best of luck!

 

[Ande]

I never imagined that I would have to write back on this forum, but here we are. I had peace of mind only a day after my neurologist visit and here we are back again with my worsening symptoms. I think my right arm and leg weakness have stayed pretty much the same as they were before my visit, but now I'm really considered about my bulbar symptoms. I can still speak okay if I speak my mother language (which is Finnish) but when I try to speak english, my speech is so horrible it's almost cringe. I have been fluent with english before, but today I noticed that I slur my speech all the time when speaking english. most of words with L and R sound. I tried some tongue twister with them pressured most on the L and R, and it was basically just mumble. It's so weird because this doesn't seem to effect my mother language. The reason for it is propably that the L and R are pronounced way differently in finnish than english. english R and L are much softer than in finnish. So I have hard time pronouncing soft vowels and words.

So should I be in touch with my neurologist again or just dismiss this as an anxiety and just keep living?

 

[Bestfriends14]

Your health anxiety is ruling your life. Go get help with it, let ALS go and live the healthy life you are so blessed to have, and that many members of this forum would give anything for.

No need to continue to be here. This is a forum for terminally ill folks and their caregivers, of which you are neither.

Best of luck to you in the future.

 

[KarenNWendyn]

Definitely dismiss as anxiety and keep living. Significant changes in your voice wouldn’t come on a day after seeing the neurologist. If the neurologist was concerned about your speech, he would have informed you and scheduled further testing.

Put ALS behind you and don’t look back.

 

[Ande]

Thank you for your replies. I promise I will get proper help for myself and never look back on this forum. There is just one last thing I want to say for you PALS out there. Specially for people who have replied to me and also other PALS.

I'm so sorry what you have to go through with this absolutely horrible disease. I wish you guys will live many more years and I pray for all of you here on this forum. You put so much time to reply for people like me and it's something that I will never forget. I will remember you all. Good luck PALS and enjoy your life to as fullest as you can.



For the last time,


Anton.