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BlsdMama

Active member
Joined
Dec 5, 2016
Messages
45
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
Three year anniversary EMG to confirm still PLS. Nope. Denervation and fibrillations in leg and back.

New date of diagnosis - 10/14/19, ALS

Honestly? We knew it was coming. I feel as though I left limbo. Hard on some of the kiddos, especially the 11yo. Going to drive to college tomorrow to tell our son. I feel pretty peaceful about it currently.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,943
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am sorry to hear it. Hard even if expected.
did you pursue the genetic testing? As a slow progressing person you have a good chance of getting into a trial sooner or later if it is c9. And your kids should know - at least the oldest - there are opportunities for being in research to help and for family planning if it is FALS
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
45
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
Did the testing yesterday. It should be back in a month.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,943
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
i am glad you did it even though it is a hard thing to contemplate. Knowledge is power
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,844
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Sorry to hear it. Fingers crossed for slow progression.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Going to drive to college tomorrow to tell our son.
Such a difficult conversation. I remember having to make this drive ourselves almost two years ago to have this conversation in person. Prayers for strength for the entire family and continued peace for you. ❤
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,520
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
It's the worst three letters I've ever heard. I was by myself when given the diagnosis. I didn't even have a reaction except I wanted to escape the office ASAP. You just have to keep reminding yourself that today you are no different than yesterday and you still have a lot of life to live.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
107
Reason
Other
Diagnosis
04/2019
Country
US
State
FL
I remember the day I got the diagnosis. The neurologist kept me waiting for what seemed like an eternity before coming into the room. I had a bad feeling and when she finally did come in I could see she was upset. She gave the diagnosis and said she had to mentally prepare herself before telling me. Our first reaction was shock and fear. But, as it sank in my only thought which I blurted out was, are you frigging kidding me? I worked more than half my life and the government is going to keep that money??? (Not a big fan of current government) I don't know who was more shocked with my outburst the neurologist or my husband. They just looked at each other in disbelief that that was my biggest concern. I guess shock will do that to you. It seems funny now but wasn't so funny then.
 

BlsdMama

Active member
Joined
Dec 5, 2016
Messages
45
Reason
PALS
Diagnosis
05/2017
Country
US
State
IA
You know I feel pretty blessed that this has been a long journey. We always felt it would move from PLS to ALS eventually so I felt quite prepared going into the EMG. We’d been very transparent with the kids. Obviously the 9yo, 8yo, 6yo, and 5yo do t grasp the complexities. As I’m a slow progress or, there’s not really a need to slap them with future details. My 11yo definitely understood what the change of diagnosis meant. I really wish they were older.

It was hard on my folks. I think they had really not let this sink in, despite three years of progressive changes. Telling them last night was rough.
 
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