well..

[scar@593]

my names scarlett. im 16 years old and i have als. =/ i dont really talk about it..not because i dont want to, but because i dont have anyone that i think would truley understand. i just want some one to talk too, i cant talk to my mom about it because she tends to cry a lot, and my sisters not one to get into conversations that bring out a lot of emotions. i guess i came on here to find some one to talk to. so just write me, please.

[joelc]

I am so sorry honey!

You are too young to have a disease such as this!

Are the doctors really sure you have ALS?

We are here for you for whatever you want to talk about or to answer any questions you might have.

How can we help?

Please share your needs with us.

Stay strong!

[scar@593]

thank you so much!
well they've been saying this for about 2 years now so im pretty sure, they're sure.
hopefully, one day they say it's not but until then im trying my hardest to stay as strong as possible.
i just dont know what to think or how to react but i've been trying to stay postive, and live my life as normal as i can.
my conditon isnt horriable but it is difficult i've notice some changes and some things i could do before i cant anymore and thats super frusterating.
but im holding my head up high and even tho some times i feel like bursting into tears i dont.

i just wanna have some one to talk to.
i wanna know im not the only person in this world. /=

[joelc]

Bless you! And good for you! You have the right attitude as those that can stay positive live considerably longer than those that let the thought of having ALS get them down.

Keep living each day like you don't have ALS and enjoy it to the fullest.

I pray they are wrong and you will wake up one day and find out you have a treatable illness!

Until then we are here for you!

[t34gib]

Scarlett, Keep up the fight. I have been recently diagnosed and also came here looking for others. My husband is in denial or something. "lets just wait and see if it progresses." What does he think it will do, just stop. It is difficult when you don't have somewhere to vent. Just know, that we know. I have my daughter who has agreed to just let me talk if I need to. I don't need to be told maybe it is something else. Acceptance is hard. But I know if I do not accept, I cannot move forward. So hang in there and we will all get through this. I sure hope they find that for you it is something else. Live every day. That is what I plan on doing. Life isn't measured by the years we live, but by the life we live. Stay strong.
The people here are good people, strong people.
Nancy

[scar@593]

nancy,
looks like we're in this together.
my moms in denial as well,

[scar@593]

nancy,
...and i've came to understand its because she cares and loves me and im very sure thats why your husband said that.
they'll never understand how we feel but the only thing we can do is try and help make them understand.
i'm pretty sure hes not gonna wanna talk about it but its good your daughter has made that agreement with you.
i really wish i had that promise with some one.

im always gonna be here to talk to if you'd like to, and thank you so much for your words i really appricate them.
+& yeahh the best thing is to try and stay strong ...and my promise to you is to stay strong for the both of us.

[Zaphoon]

Scarlett,

So, from your posting, you've had ALS since age 14. That is most unusual. Have your doctors talked to you about getting involved in any clinical trials? Have they put you on any medications? Are you involved in the local ALSA chapter where you live and how are you being helped?

Sorry for all of the questions...

Zaphoon

[hopingforcure]

This is highly unusual. Please tell us more about yourself, you have us worried.. Please share more.

[Marjorie R. Wilcox]

Hi there Sweet Sixteen person! Please tell us what symptoms you suffer. We'd really like to know, if that's okay with you.

[Valya]

Hello Scarlett. So sorry to hear you have no one to talk with. This site is a good sounding board with many 'ears' so please talk away!

What symptoms are you having? Are you on any medication?

Please give us more information.

Valya

[sharonca]

Scarlett - hope you have a great week-end!

Sharonca

[scar@593]

i'm sooooooooo sorry i havnt been on, i knoww its been a longg time but to tell you the truth i was starting to think this website wasn't a good idea..

but to answer some questions,

symptoms..i have weakness in both my legs and hands, my hands stay curled up, and i walk completly diffrent then eveyone else, i've been having some twiching in my legs, i guess thats all..for now.

lets see i've had two emgs (worse thing everrr), so much blood work i can do it myself, i've had a spinal tap or tab?..well yeah..2 muscle biopcy (dont think thats spelled right) on my ankle and thigh, alotttt of mri's, umm i think thats all

no, they're (the doctors) are not 100% sure that it is in fact ALS, so the search continues, but they've ruled everything else out..and highly believe that it is, i think that its because i'm only 16 that there not sure.

i am not on any meds.

more about me, i cant button my own shirt anymore, dont even give me a drink if you havnt opened it, i can't bend over more then 5 seconds without feeling like i just got done running a mile, i sit in the shower, by the end of the school day (3:30) im sooooooooooo tired my body hurts i dont wanna do anything, writing is horriable, my hands start to hurt really bad so the school gave me this thingy to type on its alott easier, my legs always hurt um idk what else.

well yeah thats all for now.

-scarlett

[GlenBrittle]

Welcome Scarlett.

I am sad to hear that you are having so much trouble.

The first thing to learn if you have ALS is that its all about attitude and energy. It sounds like you are learning that already.

I define attitude as not dwelling on the issues you are having as it wont help them , but trying to live and have as much fun every day. Especially the fun ! Think positive. We are all hearing about medical studies for a cure and if you are like me , we will both be there when it is found.

I define energy like the gas tank in the car. When it almost empty, you get a warning , and its time to refuel. Cat naps, food, vitamins work for me.

If it is indeed ALS, you will also want to laugh and cry at odd times. THATS OK - you are not going nuts - its part of the disease. Tell your friends this before it happens , it helps them to understand those little moments.

Whether or not you choose to come back here or not is your choice. Just know that there are very many people that have the same problems and are very caring and helpful. Stick around , you will see.

[scar@593]

glenbrittle,

i try my hardest to stay positive and to have a good attitude towards things,

i live my life as normal as any other teen, my friends are very supportive of me and know what to expect from ALS.

thanks so much for the support and all your advice!

keep in touch.

-scarlett

[crystalkk]

Scarlett,

I am sorry here that they think it is probably ALS. How long have you had your symptoms?
Sometimes other diseases take time to declare themselves as well, maybe this is why they have not given a definite dx yet.

Please keep your positve attitude, it helps.

[scar@593]

-scarlett update;
no more school for me,
beingg home bound.

[sharonca]

So sorry to hear... School is such a social thing as well. Try to keep up with your friends and come here too.

Sharon

[crystalkk]

scarlette,

Sorry to here that, we are are always here 24/7 if you need someone to talk to.

[BLPhill]

Hi Scarlett

I'm sorry to hear that. The bright side is, you won't be so tired. Take this opportunity to do some of the things you want to do without being so worn out. Stay stong like I know you will.

Take Care

[viviana]

hey scarlett I am 21 with ALS .do u have facebook? My name is balanescu viviana beatrice.add me if u do.I want to talk to u

[Phil M]

Scarlett...do you have any cramping?