Diagnosis confirmed

RandomMom

New member
Joined
Jan 26, 2019
Messages
3
Reason
PALS
Diagnosis
01/2019
Country
US
State
NJ
Hi everyone –

I have been reading the forums daily for a while now, have learned a lot, and feel like I know all of you well and wanted to let you know a little bit more about me.

I posted in the “Could this be ALS” forum a few months back and took the very good advice that I received thee to get a second opinion from my initial ALS diagnosis.

That was in March and I was able to see Dr. Kwan at Temple who has been excellent. He took the time to go over every test I had, ordered more, and confirmed my diagnosis. I am now on riluzole and radicava (finishing my first round of home infusions today).

The bright side of this very difficult situation is that I am progressing very slowly with functional loss limited to my right hand and very little additional progression in the past couple of months beyond fatigue.

I’m 54, married with two adult sons and I work at a University, which turns out to be a great place to be when you are in need of support. With that I’m trying to focus on the good things and not let myself get overwhelmed by the future. I appreciate having this forum as a place to learn from all of you and am happy to share my experiences.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,583
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am sorry it turned out to be ALS. I know it was where things were pointing but I am sure you hoped as did we it would turn out differently.

Glad to hear things are slow for progression. I hope that you are a responder to the 2 r’s and will slow down even more!

Welcome, sadly! , I look forward to getting to know you!
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,354
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
I’m also sorry to have to welcome you here. But welcome to club PALS. This is a great place to ask questions, to learn stuff, and to vent. We’ll support you as best we can.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
338
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
I'm so sorry RandomMom to hear that your diagnosis was confirmed. My PALS was diagnosed 3 1/2 years ago, and he is a slow progressor as well. I will tell you how thankful I have been for these past few years. We were able to do many things and share our time together despite this illness. Enjoy every moment you can.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,348
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hello and welcome. We're here for you.

My progression has also been slow, very slow for the first two years. Be careful not to fall or overuse your muscles. Listen to your body and get enough sleep and hydration. Do what makes you happy!
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
129
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Definitely focus on the good things, and enjoy every day. You will find that you can adjust to the changes as they come, but it won't change who you are. I was grateful for being able to work for two years after diagnosis. My body let me know when it was time to slow down. I'm glad you joined this forum. It is a comfort to connect with others on the same road.
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
147
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Greetings. This is a good place. So sorry to find you here but the people here are wonderful. Really glad to read that your progression is slow.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,523
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Very sorry to hear the news. We will support you however we can. And you are right, a university is a good place for support at times like these.

Best,
Laurie
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
147
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Hello and welcome from me too. This group of people is really wonderful. I am very sorry to read you were diagnosed with ALS.
 
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