Need some advice, 20 year olds with ALS

[beanie]

Just wondering if any of the 20 or so year olds are out there....as i said a few days ago new to this and hoping to find someone going through similar situation....I know my having cerebral palsy first and then diagnosis of ALS is something maybe different, but ALS is ALS and thats really all I am concerned about right now as my CP has not progressed and will not progress over the past 27 years.

I am wondering what to believe really....I am trying hard to figure out who is right, who is wrong. WIth one neurologist saying EMG showed definite denervation and another saying must be some other progressive neurologic disease, not sure who to believe and how long do you play the "wait and see game" until they figure out for sure....

It has been a year of testing and doctors and I am have progression of my symptoms, unable to walk wo assistance, using stairlift, unable to eat solid food, lots of quivering in my muscles all day and NIGHT long, etc., but no one comfortable yet iwth making exact diagnosis.....and now insurance company refusing physical therapy due to digression....okay, so having a bad day maybe just thinking and wondering which way to go next.....anyone else had similar instances like mine....I know being 27 is not usual for ALS but come on, if this is what it is, I NEED to know for peace of mind and to move on....thanks for letting me vent! I am sure tomorrow will be a better day.....

 

[hwbissegg]

Hi Beanie,
I first want to thank you for your reply to my post asking if anyone else is in their 20s with ALS. It's funny because there are now 3 of us female 27 year-olds dealing with this!
Anyhow, I got the run-around for awhile as well. Probably because of the age thing again. At first I was also told that I had some sort of other neurological disease, but I continued to get worse despite the treatments. When that happened, they finallly gave me the diagnosis of ALS. I got a couple different opinions and they all agreed. And in some ways it's been easier to just know so that I can deal with it and move on. I'm not a doctor but your symptoms do sound like ALS, so my advice would be to just try and accept it and decide that you're gonna fight it! That way you can start doing the things that will be helpful for ALS, such as taking Rilutek. And if you end up not having it, then it will be the best news in the world! But at least you can somewhat minimize the stress you're feeling from uncertainty. I hope this helps. Please keep us updated!

 

[beanie]

Thanks so much!

You dont know how much it means to me to know that someone else is going through the same thing....I am really trying to accept the ALS but these doctors are the ones who are hmmm, not sure right now but will take a wait and see attitude, but you are right, for my own well being...I need to take control and deal with my symptoms on a day to day basis...and it will be a good thing if for once they are wrong but just dont see that happening with symptoms worsening....

But this is a good thing finding others our age and knowing I am not out there alone....I am sure anyone on this site will understand how I feel...and I am soooo glad to have people to talk to...thanks again....

Tomorrow already is looking alot better....thanks!

 

[beanie]

p.s. I have been taking the Rilutek since last October...thanks for the great advice....you have made my day!

 

[Kevinski]

Hang in there

Hi take and hang in there. Iam heathy other than speech problems. The neuro guy says I have ALS or Progressive Bulbar Palsy which could develope into ALS or Theres A chance it could remain as Bulbarb Palsy Shitty All around . The Family is doing OK so far but its tough on everyone. So its awaiting game now. I am not afraid of dying but how what a I have will change my body. Taking it a Day at a time. Anyone can send a message to me if They want to. Kevinski in Calgary

 

[xsparklingwinex]

I am 24 and was diagnosed with ALS at 22. I went through 2 EMG's, 2 MRI's (Neck & Back) A spinal tap, IVIG drips for motor neuropathy, a muscle biopsy, blood tests, you name it. I have had no upper motor neuron signs but just recently developed a pretty frequent facial muscle spasm. I can't walk long distances or get up from a chair without help, I need help showering, dressing and lots of other things. My muscles are wasting but I still have quite a bit of strength. I can stand on my tip toes and on one foot. I'm just as lost.... I'm not sure what is normal for ALS and what isn't?