Status
Not open for further replies.

Sam63

Member
Joined
Aug 23, 2015
Messages
16
Reason
PALS
Diagnosis
06/2015
Country
US
State
va
City
chesterfield
Hi my name is Sandy,

I was diagnosed in June with ALS bulbar onset.
I'm trying hard to sort through all the info and find something
that will truly slow this disease down. There is so much info and
I'm not sure what's legit and what's not.

Mine started Nov. last year I noticed that occasionally
my speech was slurred, in February my youngest son
thought I was drunk and I knew it was time to be seen,
but had not idea ALS was going to be the diagnosis.

Im trying to continue to work as long as I can and research
as I have any moments of free time.
 
Sorry to welcome you here. I echo Greg's comment to check here before pursuing various treatments you find. There are many advertised.

This is a great place where you will find some amazingly helpful folks.

Steve
 
Sorry Sandy. Know that we all will help in any way that we can. Educate,educate,educate yourself.

My best to you,

Vince
 
Sandy, I'm saddened to read that you've been diagnosed. Were you diagnosed by a neurologist who specializes in Motor Neuron Diseases? Did they do an EMG test?

I always recommend getting a second opinion as well.

I'm sorry to tell you that there are not a lot of legitimate treatments to slow down the disease. I'm sure your doctor prescribed Riluzole. When taken early on, it is known to extend life slightly, a few months total. But not everyone likes taking it. My wife (RIP) didn't take it because it bothered her stomach and she didn't want to live with her quality of life impacted by constant stomach problems.

There are people who have lived quite a bit longer than average. You'll meet them on this board. In the meantime, look over the "sticky posts" stuck at the top of the General Discussion forum. You'll see advice on Social Security, veterans benefits, and other things.

Do you have someone to care for you? A husband perhaps?

--Mike
 
Welcome, Sandy (as hard as it is to "welcome" someone here). I'm so sorry that you've had to join us, but you will get honest, loving answers here and plenty of support. This is where I've done most of my learning about ALS.

It's easy to get caught up in the many things people claim will help/cure, but as you've already read, only one treatment has been approved so far. Good nutrition is always a plus anyway.

Read the stickies if you haven't already--there is a ton of ivaluable information there.
 
Welcome Sandy to your new family where you will get lots of advice , heaps of love and many hugs.
Love Gem
 
Hi Sandy. Welcome and sorry you have to be here.

It sounds as if you are bulbar onset so you might consider trying to get a prescription for nuedexta. It has seemed to improve swallow in some PALS. It is not approved for that though only for the symptom of emotional lability which is excessive/ inappropriate laughing and crying. This is not unusual in ALS so if you feel you have it and tell your neuro they can prescribe it.
 
Last edited:
G'day Sandy.
Great support here, as you can already tell.
Thanks for sharing your journey so far with us.
God bless, Janelle x
 
weclome sandy, on this site you will get alot of support and friendly suggestions. post often so we can git to know ya. love ya chally
 
Welcome Sandy to your new family where you will get lots of advice , heaps of love and many hugs.
Love Gem

Thank you :) nice to have another family that understands
 
Welcome, Sandy. You are amongst friends.
 
Hi Mike,
Thank you for you help! All mine started in April with the first neurologist and finally ended up at VCU and that's where the emg was done and the final diagnosis. I have struggled with it since then, I guess disbelief mostly. My husband has been very supportive and we're trying to live one day at a time and take things as they come. Too terrified to look to far in advance. Do you have to fight the Drs to get B12 shots? Just wondering something's I've read the Drs seem to be difficult, hope mine won't end up that way. I go back in early sept for my 1st 3 month appt.
 
> Do you have to fight the Drs to get B12 shots? Just wondering something's I've read the Drs seem to be difficult

Print out the Phase 3 Trial results I linked you to and take with you to the Dr visit.
 
Thank you all for being so kind. This is a dreadful disease that were all fighting and it certainly makes me feel better to know that I'm among friends and people who can understand where I'm coming from. ��
 
Status
Not open for further replies.
Back
Top