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ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I've made a few posts and got great feedback from members of this site. I was seen by a neurologist at the University of Minnesota yesterday. He had reviewed all of my medical records and test results so after a very thorough exam he told me that I have ALS.

I have mixed feelings now after seeing 3 neurologists, 3 EMG/NCS's, 3 MRI's, 18 vials of blood and a CT scan. I was lucky that the nurse that runs the ALS clinic was in yesterday so I got to spend some time with her also. I have an appointment with the ALS clinic on 12/12. I feel blessed to live in a city that has an ALS clinic and my interactions yesterday with the doctor and nurse that are part of the clinic were great.

I'm sure as I start this new chapter in my life that I will have tons of questions. I know that there are some great people here from reading threads and the responses to my previous posts. I hope to be a meaningful contributor as I learn more.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
I am very sorry for your official dia gnosis. You are already a meaningful contributor and I look forward to reading your posts and getting to know you better.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Sorry to hear this news; however, this can be a new beginning too -- at least that is what I am trying to do.

Max
 

Franklin

Member
Joined
Nov 21, 2013
Messages
12
Reason
CALS
Country
US
State
AR
City
Hardy
Yes, Max, Minneapolis has an outstanding ALS Clinic. We used it from summer of 2011 until May of 2012 .
My wife got too weak after the Mat visit.

We/she really liked the 2 different doctors she saw over that time span.

My wife was diagnosed by Dr Fink in St Paul and again by Dr Nygun in St Cloud
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
760
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
There is a fund of knowledge to be had here. It's a very difficult diagnosis to receive in the 1st couple weeks might be a blur. But ask us anything because we've all been through it.
Hollister
 

ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
I'm trying to get all my ducks in a row now. I'm a veteran so the nurse from the ALS clinic is hooking me up with a rep from the Paralyzed Veterans of America to start the paperwork for my VA benefits. I hope I'm able to work until the VA benefits start then I'll consider going out on short-term disability.

I want to do some traveling while I still can. I've got relatives in Florida and Georgia that I haven't seen in years and want to see them while I still can. I've also been thinking of putting together a bucket list of places to see and things to do.

I definitely want to make the most of every day.

Thanks everyone for the encouragement.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
I'm trying to get all my ducks in a row now. I'm a veteran so the nurse from the ALS clinic is hooking me up with a rep from the Paralyzed Veterans of America to start the paperwork for my VA benefits. I hope I'm able to work until the VA benefits start then I'll consider going out on short-term disability.
.

the PVA rep here in Houston has been wonderful. he got us in their system in two weeks!
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Hi Ecutchins,
Welcome to the forum but so sorry for your need to be here. You will get alot of support on here and valueable information. Hope to get to know you better on here. Kim
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Great subject line and attitude.

We are still whatever we make of our situations, I hope you pack in heaps and heaps of great stuff and find your life enriched!

I am sorry for the diagnosis for you, but I'm glad you are already here :)
 

Gzack

New member
Joined
Nov 12, 2013
Messages
2
Reason
PALS
Diagnosis
05/2013
Country
US
State
New Jersey
City
Hillsborough
My name is Gary I was diagnosit on May 20 at Johns Hopkins I live in new jersey although I continue to see Dr at Hopkins I'm 51 years old have a wife and two boys .I feel scared but when I read some of the research going on it does seem to make me feel like there is some hope.Should I have faith in some of the research that I read about.as of now this has caused great weakness to my right leg and arm and also abdominal musles any advice would be greatly appreciated .

Thank you so much.
Gary
 

ecutchins

Active member
Joined
Sep 11, 2013
Messages
33
Reason
PALS
Diagnosis
11/2013
Country
US
State
Minnesota (MN)
City
Fridley
Hi Gary,

Sorry you are here. I have weakness in both arms and hands with some additional weakness in my right torso. I too hope that advancements will find a cure or something that slows progression.

I knew something was wrong in June of this year but looking back the symptoms started a couple of years ago. I just attributed them to getting older and being out of shape, boy was I wrong.

I'm just a little older than you and my kids have been grown for a while now. I even have grandkids already. I had great plans for retirement in a few years but that is changing. My advice is to live each day to the fullest. Hug your kids, tell them you love them, kiss your wife, whisper I love you in her ear, do the things that make you happy and pray for a cure,

I wish you all the best.
 

Gzack

New member
Joined
Nov 12, 2013
Messages
2
Reason
PALS
Diagnosis
05/2013
Country
US
State
New Jersey
City
Hillsborough
Just can't understand

Hello to everyone this is all new to me as I just learned I have ALS in May of this year.
But while doing some reading this morning I came across an article title Men under go risky surgery for ALS and went on to say how these two patients at Emory Univ in Atlanta under cell transplants and actually improved to have the ability to walk.With an illness as bad as this why don't the patients have the right to choose weather or not to try this I mean it's our lives that are at stake and we all know what will eventually happen if we do nothing again maybe someone can help me under stand.

Thank you
Garyk
 

jdismuk1

New member
Joined
Nov 20, 2013
Messages
1
Reason
Lost a loved one
Country
US
State
georgia
City
albany
I am sorry to hear of anyone who has been told that they have ALS. I dred hearing of any family dealing with a love one with this illness. I worry about my son and daughter daily. Scared to have them tested. Don't know enough about there fathers family to even began to understand if ALS runs in his family. It's been two years now that Robert, my son and daughters father passed away at the age of 46. Still asking why.... I joined this site so that I can get a better understanding and help in anyway I can.
 
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