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EdenLife

New member
Joined
Feb 5, 2016
Messages
2
Reason
Learn about ALS
Country
FR
State
France
City
Paris
Okay, I told myself I would never do this but here goes (I have read the sticky multiple times) :
First off : I'm 18 years old and there's no history of ALS in my family but I've been having worrying symptoms over the past month.
It all started on january 7th, I was playing videogames in my bed when I had a strange "wave" in my head and palpitations, I stood up and went to the living room, I was panicked because I couldn't think the way I used too and felt really strange. My parents got worried and called the emergency doctors who told me there was nothing to worry about and it was just due to lack of sleep.

Then the next day I still couldn't think straight and I was experiencing strange "waves" coming from the back of my head as well as neck pain and hot and cold flashes. Then some days passed (I did see my GP once and she told me it was stress related since my bloodwork came fine and prescribed some alprazolam and made me schedudle a MRI for my symptoms and for the headaches I was experiencing since I was a child) and I woke up with a strange feeling in my left leg, no weakness no nothing, just a strange feeling, like I was "disconected" from my body, then the feeling went on to my left arm and soon my whole left side felt "weird", I also couldn't sleep a wink at night, but my psychologist prescribed zopiclone which helped a lot.

A week passed and the symptoms kept getting worse and worse I started hitting the wrong keys on my keyboard, I experienced muscle jerking (not fasciculations, I think, like just one huge jerk of a muscle group rather than a single muscle twitching), it felt like I was starting to lack dexterity, and I was starting to experience trouble with recent memory. During that week I spend an incredible amount of time on google typing my symptoms and finding out about the joy of brain tumors and their devastating effects.

Then came the day of the MRI, which came clear thank you very much (needless to say I was 100% sure I had a brain tumor until that point, I even started to doubt the reliability of the radiologist a few days after because my symptoms were still there).
Two days later I went to my GP for a followup check, and in the waiting room I made a fatal mistake : I learned about ALS while looking at a random article on the internet. I've been scared ever since. The GP appointment went fine she noticed brisk reflexes and she insisted that It was just stress, told me to continue seeing my psychologist but still made me see a neurologist "just in case".
At that point my symptoms had worsened, I was experiencing slight photophobia, eye sensitivity (which is now gone), and I started to FEEL my legs growing weaker and weaker.
I went to see the neurologist, he made a really quick check up (not even ten minutes,did not even make me take my shirt off) and told me it was stress but that if I had any other symptoms I could contact him anytime.
Now two weeks have gone since I went to see him and the symptoms have worsened, my legs feel like jelly and tremble a lot, I'm experiencing twitching and fasciculations everywhere (mainly in my right leg), my left arm muscle do not contract as well as my right arm's (there's a "latency" between the time I contract them and the time they actually are, even thought I'm left handed ) I feel like I'm drunk walking, I have hand tremors, a twitching big toe, my face muscles feel strange (like I'm about to cry any second), and I've been FEELING like my limbs are getting weaker by the day (I'm insisting on feeling because, exept for the shaky legs there's yet to be any actual clinical weakness), shortness of breath (which could be just anxiety) and other stuff that I can't really remember because I'm not experiencing them right now.

Now don't get me wrong, I'm not here because I think you all are doctors, I have an appointment on the 22th of february with a "better" neurologist (the other one was really nice but this one is the one my GP and radiologist recommended) but meanwhile I haven't told anyone about my fear of ALS because it feels so far stretched and ridiculous, but at the same time my symptoms are real and really scary and I can't help but check google EVERYTIME I experience a new (or old) symptom, it's exhausting and annoying so I decided to make a change and talk about it, and I know that if I have to talk about it with ANYONE i'd be you guys.
So, long story short, hit me with your best shot guys, I'm not looking for reassurance or confirmation, I just need an oppinion do you think I could have it ?
 
No. You're wasting a lot of your parent's time and money and taking up appointment slots that truly sick people need.

Instead of spending time here--which is a waste of time for us people actually dealing with the disease--I suggest spending your time A) understanding what ALS is, and B) enjoying life with the gift of being 18-years-old.

If I were to venture a diagnosis, I'd say you need a decent diet and proper sleep.
 
No. You're wasting a lot of your parent's time and money and taking up appointment slots that truly sick people need.

Instead of spending time here--which is a waste of time for us people actually dealing with the disease--I suggest spending your time A) understanding what ALS is, and B) enjoying life with the gift of being 18-years-old.

If I were to venture a diagnosis, I'd say you need a decent diet and proper sleep.
I am the one paying for all of my appointment and everything is more or less covered by my inssurance, my parents are not aware that I'm going to see a neurologist and they think my symptoms are gone, I really don't want to worry them anymore.
Thank you for your answer, I won't insist and take your word for it (I'm still going to see my neurologist just in case but you're absolutly right).
 
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