Sitting here in tears and am shocked (update)

[NoExcuses]

Sitting here in tears and need advice

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
but I feel so hurt and shocked.</end quote>


Talk through this .... why do you feel hurt?

I understand the shocked, but why the hurt? Do you think someone betrayed you or purposely withheld info?

 

[NoExcuses]

Sitting here in tears and need advice

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>my65roses4me</b></i>
but I feel so hurt and shocked.</end quote>


Talk through this .... why do you feel hurt?

I understand the shocked, but why the hurt? Do you think someone betrayed you or purposely withheld info?

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[Mommafirst]

Sitting here in tears and need advice

I'm so sorry Khristina. I'm sure having a piece of information like this feels like a major upheaval. But the others are right, your prognosis doesn't change.

My daughter has w1282x. It is a class one, nonsense (or x stop) mutation. It is one of the mutations that are being aggressively studied with the ptc124, and has shown some success.

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[janddburke]

Sitting here in tears and need advice

there is also some new drug in the pipeline specifically for 'X' mutations.

which could also be pretty cool!

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.

 

[my65roses4me]

Sitting here in tears and need advice

Emily,
The df508 I have been told is a dletion gene. Am I right? Is the W1282x a deletion gene also? I looked at that link you poste but its all foreign to me. I am real bad at understanding dr lingo. I have to remind them to talk to me at my level LOL!!!

Amy,
I dont feel anyone purposely withheld info from me. But I was given the wrong info from the get go. I know it doesn't change my prognosis at all.

But when it comes to new meds I always thought I was axed out because df508 is a deletion gene right?
When it comes to the good meds that reverse or make the cloride channel work better or have something work in its place I have always been under the impression that people with the df508 were left out in the cold because their isn't anything to fix whats not there, right???
I am not sure what to think about any of it to tell you the truth. I just feel that I have been mislead about this and now question everything I thought I knew about my disease and my mutations. It might not be rational but thats how I feel right now. I am ust confused about all of this now.

I am happy that I have you all to turn to, because I would feel sooo alone right now if I didn't know about this website. I think I need to relearn what I thought I knew about my mutations. Start fom there and move on I guess.

The good thing is that I found out all of this before my hubby was tested so they know what I have first. This is just another shock in my life and I will have to deal with it and keep learning.