Status
Not open for further replies.

stv1st

New member
Joined
Dec 18, 2008
Messages
3
Reason
Learn about ALS
Country
US
State
GA
City
Dallas
Well the day I thought would never come did...out of the blue. I was diagnosed on Dec. 30 at Emory in GA. It all started about a year ago with some fasiculations in my arms, pcp thought it was a pinched nerve, had some mri's done, resulted in arthritis in my neck.
Got a job transfer to Atlanta about 7 months later, in the meantime getting weaker.(noticed it on the golf course of all places) saw my pcp up here, he said no way to ALS but sent me to a neuro, neuro did initial office exam, suspected ALS, did an EMG, sent me to Johnathan Glass at Emory in ATL and here we are. I am only 39. Just bought a brand new house with my lovely fiance', nothing could be better.....then the ALS monster rose out of hell and captured my life. I am staying positive, my fiance' is amazing and very strong. I still can walk, talk etc., my arms and legs are weaker, dexterity in hands is diminishing and I do have shortness of breath when exerting myself.

I just would like to know what to expect next. I know that progression is different with everyone. I did start Rilutek 2 days ago. What about lithium?
Thanks
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
hi stv, am so sorry to hear about you diagnosed. I will keep you in my prayers. Staying positive, keep praying, fighting against this damn disease, and taking care of your self is the best thing you can do. I remember when my son was first diagnoseded, I also saw this damh disease as "a monster rising out of hell." It hit me really hard, changed my life, and every single day I dreamed that it would go away, and it never did. It claimed my dear son on June 3, 2007. This is the worst disease I have heard of other than cancer. At least with cancer some people have a chance. Enjoy your life with your loved ones as much as you can. It's a sad journey, but God will never leave you, He will be with you every step of the way. May God bless you, and keep us posted, This forum consists of a lot of caring members, and they will do their darnedest to make your life better. Take care my friend!

Irma
 

KevinMDA

Member
Joined
Jun 10, 2008
Messages
16
Reason
Other
Country
US
State
IA
City
Johnston
MDA Can Help

Hi stv,

Please contact your local Muscular Dystrophy Association office and get registered with them. They can help with clinic visits, wheelchair purchases, support groups and more.

You can find the contact info on the website, www.mda.org.

God bless,

Kevin
 

stv1st

New member
Joined
Dec 18, 2008
Messages
3
Reason
Learn about ALS
Country
US
State
GA
City
Dallas
Thank you. I am sorry to hear about your son.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Hi, Stv ... I'm so sorry about your diagnosis. It hits like a ton of bricks, I know, and you are much too young to have to go through this.

I'm sure others can give you feedback on lithium ... I haven't tried it. My only advice is to keep your weight up ... NOT losing weight actually slows the progression even more than Rilutek, so you get double benefit ... and stay determined to fight. Much research is being done, and there are living testimonials on this forum from people living 10, 15, and even longer lives with ALS. It is a new chapter in your life, but it's not the end of the story.

Bless you and your fiance.
 

stv1st

New member
Joined
Dec 18, 2008
Messages
3
Reason
Learn about ALS
Country
US
State
GA
City
Dallas
Thank you for the support.
 

771

New member
Joined
Mar 2, 2006
Messages
9
hey stv, i was also 39 when als moved in, now i'm 44 sitting here in my wheelchair giving you my best advice...LIVE IT UP NOW!
i kept working like a fool and now i regret it, wish i did some things i cant do now.
good luck
RON
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Good advise - Be strong and keep fighting! The calmer you stay the slower the progression! Get rid of any stress you have in your life as it will take you down quicker than anything. No one knows how fast the progression will happen, everyone is very different, you might have years before you start being affected to a point you need help. Also, be thankfull we live in a time when technology is so good! There is no reason you cannot live a long and rewarding life. I have a tracheostomy and vent as well as a feeding tube and spend my days in a powerchair, but it does not keep me from doing anything I want to do. We get out and go places just like before ALS! Keeping a positive outlook is essential. Don't be conserned about tomorrow, enjoying today to the fullest and you will be around for many years to come!
 

Tall John

Active member
Joined
Mar 30, 2007
Messages
81
Reason
PALS
Diagnosis
06/2007
Country
US
State
ca
City
novato
My take

Do Rilutek. None of us REALLY know, but trails show it works.

Forget the Li. Enough here have done it, doesn't work.

Do some fun things now. Yeah you'll cry a lot, but it gets much more difficult later.

You sound like a slow progressor.

Click on blue Tall John to read my old posts.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi sty. Sorry about the diagnosed. I'm not hearing good things about the Lithium. It was supposed to be a great help but I don't think the results are that promising. I tried it and quit after 3 months because I felt it was speeding up my progression. At least half a dozen others at my clinic that I am aware of quit it early. I have heard of a few cases where some thought it was helping. More nays than yays though.

AL.
 

rocmg

Distinguished member
Joined
Dec 29, 2008
Messages
388
Reason
PALS
Country
UK
State
N/A
City
N/A
dear stv1st... sorry about your diagnosed. marry your fiance! good luck and god bless.
 

Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
sorry to hear stv..I see Dr glass too.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
stv1st,

My husband doesn't take Rilutek, but does take Li. The benefits he has found with Li are less cramps and spasms.

Can't really tell you what to expect next. My husband was diagnosed 09/06 and still walks fine, talks (needs to repeat a lot), losing left hand/arm use, and gets fatigued easily (but he usually over does it).

So, as you can see, he has passed the 2 year mark!

You must remain as positive as you can! Your fiance sounds great!

As someone else suggested, you may want to do some things you always wanted before you can no longer. Enjoy your time with your fiance, hopefully y'all can marry!
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
stv:

As you read more posts on this site, you will see first hand the great PALS role models we have here.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Welcome to the forum, Stv, although I wish you did not have to seek us out. Check in as often as you need and ask about anything. People around here are great! Regards, Cindy
 
Status
Not open for further replies.
Top