Young people with ALS

Status
Not open for further replies.

greg45

Active member
Joined
Dec 23, 2012
Messages
36
Reason
PALS
Diagnosis
12/2012
Country
US
State
Nebraska
City
Ceresco
I am new to the site. I am a 27 years old and just got diagnosed with ALS just wondering if there are any other young people on this site?
Thanks
Greg
 
Hi Greg, I'm really sorry to hear about your diagnosis, I'm not diagnosed yet but I'm in the process and I'm 33. My symptoms are hyper reflexes weakness and stiffness especially in feet and ankles, atrophy in feet and widespread twitching. Maybe I'll have answers after christmas holidays. This forum is full of special people and it's helping me a lot, hope you find here some help too. Greetings from Italy
Chiara
 
Hey thanks for the reply. Well I hope that it is something other than ALS. I just got back from the Mayo clinic in Rochester MN with my diagnosis. Just so crazy because six months ago I was working out 3 days a week and now I can barely climb stairs and I can't even button my own pants. But hell maybe the Mayo clinic was wrong and someday soon my neurologist will find something that everyone has over looked. Merry Christmas from the US!
 
I'm really really sorry, you're so young and I read you have 2 little daughters. Sending u an hug
 
Thank you very much:). Hope everything works out for you!
 
I'll keep u updated, I still have a little hope but this thing I'm going through is really weird and scary......things I used to do without any effort are becoming extremely difficult.....walking, standing, taking a shower..I wake up and every morning begin the fight again this symptoms. I feel I no longer recognize my body. Just wanna know what's happening to me.
 
Well hopefully you get something figured out soon! Be sure to keep me updated please:)
 
Hi Greg,
I don't have ALS but have been an active forum member for almost a year now, and just thought I'd welcome you. I'm sorry you had to find this forum, but as you'll see, this place is full of amazing and supportive people. I'm sure there are other forum members in your age group facing a similar challenge. Hopefully one of them will chime in soon. I'm 33 and have an as-yet-undiagnosed progressive neuromuscular condition. If it's of any value to you, feel free to click my name, view my profile, and browse my previous threads. The one that captures and sums up my experiences best is called "Update - As Promised."

One thing I can tell you is, while you may face some unique challenges being so young with ALS, many of your struggles will be shared with forum members of all ages, so you should get some really solid information and support, here.

Take care,
Luke
 
Hi Greg..

I'm a 30 year old mom of 2...so far I got a possible ALS diagnosis. I travel to the Mayo in FL on Jan. 2 to see the specialist there. I too was in the gym at least 3 days a week...cardio 4-5, and now stairs are dreaded. Difficulty breathing...twitches, leg jerk and upper body jerk...and now I keep trying to clear my throat and excess saliva. It is difficult for me to deal with like so many. The people on here are so informative and encouraging though. I guess in any situation trying to stay positive. Did the mayo not suggest trying IVIG to see if you would respond..for the possibility of something being auto immune?
 
I'm 31 - PLS, though, not ALS.
 
Lolita
sorry to hear about what you are going through. yeah i did try 5 days worth of IVIG's around the 2nd week of October but had no affect. maybe i just need to try another round of IVIG's? I have read that sometimes one dosage isn't enough.
 
Greg,
as you may know there is now great hope for every ALS patient.
I am a member of an all volunteer group ALSTUN (ALS treat us now), we are working with pharmaceutical companies to establish early access programs.
In addition we are forming a support group to help accelerate stem cell procedures.
If you would like to join us or learn more please PM me
 
Greg, my prayers go out to you I am 33 have not been diagnosed but I feel your pain, god bless you and please be strong and positive.
 
Greg,
as you may know there is now great hope for every ALS patient.
I am a member of an all volunteer group ALSTUN (ALS treat us now), we are working with pharmaceutical companies to establish early access programs.
In addition we are forming a support group to help accelerate stem cell procedures.
If you would like to join us or learn more please PM me
Not sure what pm is? Sorry new to site. But I am interested
 
Status
Not open for further replies.
Back
Top