Just want your support...

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KiraM

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You’re all going to think I’m crazy..I know. I promise I’m not chasing this disease. I just want support through my journey. I just want to ask if I could hang around here with all of you, I love all of you. Your stories inspire me and talking to you all makes me feel so much less pain. It helps feeling the comfort of others going through what you’re going through, really it does. I just want your acceptance. My reasoning for coming back is that I’m pretty sure what I have is either UMN ALS or PLS. I’ll be going to a new doctor this Monday and will be asking for a neuromuscular specialist and maybe a prescription for Baclofen (I’m not sure how it’s perscribed), so that’s where I am at the moment. I feel best when laying down but even then I’m in extreme discomfort, but I’m taking it day by day. I just wish I had that darn baclofen so that my legs would stop with their constant tightness. My mother is extremely supportive and she’s been a complete saint, my father passed when I was young so she’s all I got! Love you all and hope you’re doing well. I’m hoping you’ll take me..I know you have such struggles in your lives..and I completely understand if you do not wish to talk to me, but I think we could really help each other if we can support each other through these hard times.




P.S. There was a huge spider just a second ago! I trapped it, saving my dachshund Ginger from the impending doom! That’s my success story of the day
 

Bestfriends14

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I knew you'd be back; I knew it.

No, Kira, you may not "hang around here". This is not a chat room, it is a site for terminally people and their caregivers. The fact that you want to hang around here is very telling and quite frankly, sick. You don't have ALS, no matter how badly you want it.

There are hypochondriacs that stay on this site for 10 years. 10 years!! They've never, nor will they ever, be diagnosed with ALS. Don't let yourself become one of those people. So far, you are slipping down that rabbit hole. Don't be 27 and still posting here. Don't let it be tomorrow and you posting here. There's not a reason for you to be here and that's a reason to celebrate.

Good luck to you, Kira, and seriously, please, goodbye. It's for your own good.
 

Nikki J

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Mar 22, 2012
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7,248
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PALS
Diagnosis
04/2014
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MA
Kira. You need to listen to us. You don’t have ALS or PLS. She do have very serious health anxiety and possibly some other mental health issues. I feel you are very fragile emotionally and need more intensive psychological therapy than you are getting. You said you have a counselor? You may also need a psychiatrist to help you beat this. You are not “ crazy” but you are ill and need help.

This site is extremely toxic for those who have health anxiety. Really really really dangerous. I beg you print all your posts and the replies show them to your mom, your doctor and your counselor. Show them those videos you made. Please block this site and any other ALS sites.

There is no shame in asking for help to beat this. Don’t let it deatroy you. Please!
 

KiraM

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Bestfriendstilltheend..I completely understand that..you all have so much love here and understanding, I just am so miserable with how my body is feeling, so I just wanted to be around people who are feeling what I am, I just want to share support with you so bad. Please I really don’t want this disease, I cry everyday because of how my body isn’t cooperating with me. I just wish to share support with each other, really that’s all I want, I know it isn’t a chat room..but you are all who I can relate Most to...
 

KarenNWendyn

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Jul 29, 2017
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1,813
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PALS
Diagnosis
07/2017
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Kira, do you want ALS or PLS?

If so, that’s really sad. I can tell you, it’s not something you want.

If you want a terminal illness, then I can only conclude that you are crying out for attention that’s perhaps you didn’t get while growing up. Maybe you only got it when you were ill.

Take a good look at this. It is not normal behavior. You need counseling. You need to turn your life around. You are a teenager. You can have a great life ahead of you, but not by hanging around a website for people with a terminal illness.
 

KiraM

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Karen and Wendy, Nikki

I have been going to a psych and they are very helpful, but they do understand I’m suffering from something that isn’t anxiety. And do agree that I should investigate further because I cannot preform daily tasks regularly, I cannot even walk my dog right now which makes me really sad..trust me, als is the last thing I want. I wouldn’t wish it upon my worst enemy
 

Bestfriends14

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Messages
583
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CALS
Diagnosis
05/2017
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Alberta (AB)
I'm not sure if this is possible, but I do feel you should be banned for your own good. You are a child and turning to adults on a forum. That's not good for you at all. I'm sure your psychiatrist would conclude you have a type of somatoform disorder rather than something physical.

For your own good, leave this forum. Please. You will never, ever be able to relate to what it's like to have ALS, so please do not even try to compare. It's asinine and insulting.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,072
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Kira, you've been cleared of ALS, so have no sensible reason to be on this forum.

Please understand you are asking people who have ALS and the people who care for them to also take care of you now and support you emotionally. This is very wrong on a few levels. Firstly because you are not an adult- and it is also very clear you need some very serious professional psychological/emotional support while you figure out what is wrong with you physically. People with ALS should not be asked to provide this for you. That you are unable to see this tells me you are not emotionally healthy and need to see your counselor immediately.

While I sympathize, this forum is not set up to support people with health anxiety, who have something other than ALS or who need emotional care. It's important for you to examine why you have a need for terminally ill people to provide you emotional support and daily sympathy/attention. We are not your caregivers, parents or grandparents- we are strangers on the internet. If you aren't getting the care and attention you need from family, you must seek support from a school guidance counselor, your family doctor or a therapist.
 

KiraM

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Joined
Sep 8, 2018
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US
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I understand...I’m sorry if I upset any of you, it really isn’t my intention. I really truly just wanted friends who are going through something similar. I will leave, I wish you all the best and hope that if I am diagnosed that we can go through this together.


Bless you all
 

lgelb

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Nov 5, 2009
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7,261
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Lost a loved one
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09/2009
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WA
Mod note:

We have closed this thread, as we sometimes do, to protect a user's well-being. As a reminder, you can always report a post to the moderators by clicking the appropriate icon at the bottom left of any post. As yes, the mods can and do ban people for specified reasons, which can include "their own good."

As we all know, this will come up again, because sometimes teenagers and young adults (as well as older adults, of course) become obsessed with diseases and health -- ALS is certainly not the only topic that can become an unhealthy obsession, but it is, of course, the one that we see here.

We are probably "healthiest" as a forum when pre-existing members who post here in DIHALS address new posters with as much compassion and understanding, veering into "tough love" if/as appropriate, as they can muster.

On days that we cannot do this, and everyone probably has some, it is wise to not read the posts. There will always be someone here to pick up the slack. That is one of the great aspects of our forums.

Thanks to everyone who contributes here.

Best,
Laurie
 
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