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Jayne A

New member
Joined
Aug 13, 2013
Messages
9
Reason
PALS
Diagnosis
07/2013
Country
US
State
Somewhere
City
Somewhere
Hey guys, my name is jayne! (not a girl haha)
I'm a 15 year old who was recently diagnosed with multiple sclerosis, as well as ALS.
I'm not afraid of what comes next, and I will fight it until the end. If Stephen hawking did it, who says I can't?
I look forward to spending time with all of you wonderful people! The fact that this forum exists is very reassuring to me, especially when I feel so alone when I'm at home and my parents are at work...
 
A warm welcome to you Jayne, though I'm terribly sorry for the reason that you had cause to find this forum.
 
Thank you for the welcome, I just felt like I was the only person with ALS so I did some digging and found this forum.
Its been extremely hard on me and my family lately, and I was hoping that this forum could help ease my mind.
 
Hi Jayne,
I am not a expert by I never heard of someone has young as 15 having ALS. Has anyone else on here. I am kind of suspicious of you and apologize if you are truly legit. But, I also question why you would be on the forum instead of attending school. Unless, your symptoms are so bad that you can't. But, I still think most of the responsiblity and questions should be your parents. They should be in charge of your care. If you truly have ALS as you stated you have enough on your plate without having to make medical decisions. Best of luck to you. Kim
 
My doctor told me it's an extremely rare occurrence.
It's summertime for one, and although I'm able to go to school, I'll never be able to work so I've decided to stay home from school and spend my time with my family and friends. All of my medical and financial issues are done by my parents, but I thought this forum would be beneficial to my mental well being, because ive been having major depression and anxiety about everything and thought it would be refreshing to talk with people who understand my struggles :/
 
who looks after you all day Jayne?
 
Jayne,
I'm sorry for the suspicions. But, unfortunately at times we have people on here who are fakes and try to mess with us. I don't understand why they would do that but they do. The not attending school does kind of make some sense in situation. But, I'm also be optimistic that we will find a cure soon or more medicine to help with the progression. Best Wishes to you. Kim
 
I am sorry for your diagnosis, double whammy. Whew. Welcome to the site. Don't know how you will feel about talking to us old folks though. We have tons of information, insight and compassion. We will help where we can and listen too.

I read the article you posted, very touching. Made me cry, its not fair to face illness at such young ages.
 
Jayne,

As a minor accessing an online discussion board, you need to be especially mindful about posting personal information such as your hometown and the fact that you are at home during the day without parents.

There are many wonderful, incredible people here on the ASL forums.
But there are also plenty of pervs out there on the internet.

Please be careful!
-EZ

PS: Hello . . . . any moderators watching the postings this afternoon? Heads up here.
 
You're right, I fixed it.
And my health isn't too big of a concern at the moment, I still have 99% of my mobility. But I'm not sure what's going to happen when I need more constant care.
 
Hi Jayne,

I do wonder who looks after you whilst you are not at school as you said your parents both work? Are you at home alone all day?

You said also in your first post that you aren't worried about the future, but then a bit later you said you are suffering major depression and anxiety. Believe me I can understand that, someone so young with so many health issues.

Are you on meds for this?
What kind of support are you hoping we can give to you?
 
I'm taking Zoloft and riluzole
I was lying to say I'm not scared, who wouldn't be? But sometimes I can muster up enough fake confidence to feel better.
And I don't have anyone to look after me because I don't need it, yet anyways...
 
Hi Jayne,
so what are your ALS symptoms and how did you get diagnosed?

it must be hard to be at home alone all day?
 
For me, it started with the muscle twitches and it was actually my mom who noticed I was waking abnormally (my grandmother died from Als) so my mom was vigilant of the symptoms

My doctor did an EMG, an MRI, and a blood test and said that I had ALS...
He called me in to his office a few days after I took the MRI and blood tests, and he told me to make sure my mom and dad were there, then he sat us all down and told me the news, and about some treatment options...

I'm perfectly capable of taking care of myself, I'm still able to walk and function normally, I have fallen down the stairs once before, but I never told my parents about it.
 
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