Diagnosed December 30 2008

[stv1st]

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]

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]

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]

Thank you. I am sorry to hear about your son.

 

[BethU]

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]

Thank you for the support.

 

[771]

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]

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]

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]

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]

dear stv1st... sorry about your diagnosed. marry your fiance! good luck and god bless.

 

[Phil M]

sorry to hear stv..I see Dr glass too.

 

[brooksea]

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]

stv:

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

 

[CindyM]

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