27 and just diagnosed with ALS

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greg45

Active member
Joined
Dec 23, 2012
Messages
36
Reason
PALS
Diagnosis
12/2012
Country
US
State
Nebraska
City
Ceresco
Hi. I just got diagnosed with this crap and I am only 27 yrs old. I have two beautiful little girls one is 4 yrs old and the other is 10 months old. I am also married to a very beautiful and special woman. I was just curious on what people's thoughts were on the drug rilutek. Was it worth the money for only a couple months extra to live? And also does it tend to work better in someone who is younger? Thanks very much and I'm sorry for whoever has to deal with this crappy disease no matter how old you are
Greg
 
Greg sorry you are here on this site with the rest of us. I am the slow progressor and have elected not to take rilutek. I do however, take Mestinon for my fatigue. It is generic and was originally developed for myasthenia gravis. I take half a tablet after a meal 3 times a day. It has really helped me with the energy challenges of ALS. This forum has been a lifesaver for many of us because no one can possibly understand but those of us who are going through it. One day at a time. Try to focus on what you still can do. And we will all help you as much as we can.
Holly
 
I'm sorry to. But thanks for the reply. Just feel bad for my wife more than anything. But nothing we can do. Hope you have a merry christmas and a happy new year
 
Sorry Greg that you have to find yourself here. There is a great group of people here so if you have any questions, ask away. I have chosen not to take the med.
 
Thank you very much for the reply. I don't think I will take the medicine either. For some reason I feel that is money that I am taking away from my little girls. Also I am not going to change anything about the way I live life except for maybe taking a few more breaks now and then;)
 
Hello Greg,

I am very sorry about your diagnosis. You likely feel like you're walking around in a fog- but it does lift after awhile. Have you been to the ALS Clinic yet? The one I attend, is wonderful and staffed by knowledgeable and caring people.

Rilutek- I have not made a decision yet. No particular reason.

Your family sounds wonderful! Greg, I'm no scientist or medical person, but I would venture to say your youth is a great asset. I really believe a cure is right around the corner. By looking around this site, you will get a ton of reliable information, but take your time.

Have a blessed Christmas and know that you are absolutely not alone in this. We are the chosen people!
 
greg45 welcome to the place no one wants to be i don't take the medicine even though the va would pay for it, to expensive and little benifit the best thing you can do right is get your body as healthy as possible as quick as you can, diet, correct supplements and light exercise. i am a slow proggressor who believed you can slow progression but was called cruel for saying so now say there are things you can do to extend life expectancy participate in local support group, go to multi-discipline clinic, volunteer for drug trial to name a few diagnosed 2/2010 at age 74
 
Thank you for the reply. I have not been to the ALS clinic yet. I meet with a neurologist on Friday who does a lot of research for ALS and I am going to ask him about the clinic and the MDA and see what direction he points me in. Have a wonderfull Christmas
 
Welcome. This place has been a life line of valuable information for me. I hope that you'll find what you need here as well.

Please register with the CDC and take their surveys.

MDA and ALSA provide some excellent caregiver guides if you'll register with them. Contact your local chapters and they will send paperwork for your Doc to sign.

You'll find plenty of discussion on Rilutek in our archives. (And on just about every other topic as well.) I had to stop at 7 weeks due to an elevation in liver enzymes.

So sorry you had to join us on this journey.
 
Hi Greg. Sorry about your diagnosis. Glad you found the forum and how to start a thread. It is a lot to take in. I had a terrible time in the beginning with emotional stuff.
I am also a slow progressor so I have opted not to take Rilutek. I have a wonderful husband and a 19 year. Old daughter.

Find your local ALS Chapter and they can help a lot. Mine has been a real Godsend to me. Also another good forum is Patients like me. They have a ALS forum too. You can track your progress, monitor symptoms,medications, etc. easily on that site. I frequent both forums.
Hope that you find some answers and peace to you.
 
Hi Greg,
I am so sorry to hear about your diagnosis. What I would strongly recommend is that you visit your local ALS clinic and get on a list A.S.A.P to get into one of their clinical trials. My dad was denied because of his progression and probally his age to participate in some. But, they recently came out with some really new promising drugs. Your young age is in your favor. I truly believe that a cure is going to be found soon. I don't know how good your appetite is right now but you might want to try drinking either Ensure or Boost to build up your system. If you need advice or want to vent we are here for you. My dad did take Ritulek for a few months but quit taking it because he felt it wasn't helping him at all. I haven't heard anything overly promising on it from what I have read. But, what doesn't work for one person may work for someone else. Please try to stay strong. I will add you and your family to my prayer list. Kim
 
Kim. Thank you very much. Hopefully I will be involved with a clinic by the end of the week
 
Hi Greg, check around the site as most of us do take supplements though there's no proof they work... or if we just have more expensive pee...
 
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HelenL...thank you very much. i will try to get involved with **scam words removed** hopefully and anything else for that matter that shows signs of slowing or improving this crappy disease
 
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Greg, I am Jamie. I have Bulbar ALS and I started the **scam words removed** yesterday. I will try to keep you posted. Check it out. Google **scam words removed** . I am so sorry you have joined the forum under these circumstances. Keep a positive attitude. It will go a long way for you!
 
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