So, Nikki, I was fortunate to have my doctor prescribe the Neudexta, but, as I suspected, Medicaid/Medicare will not pay for it. It's $900 a month and I neither expect them to nor blame them for not paying. Why should I be able to afford a drug at the taxpayer's/government expense when most people, who are working hard for a living, cannot afford it. What makes me so gosh darned special. Nothing. (Sorry, didn't mean to go off on a rant road lol. I'm very fiscally conservative and hate the position I find myself in.) Anyway, since that is not an option, I thought perhaps you might have another suggestion. I'm all ears.Hi Katy. Sorry you are here but you are among friends. Sounds like you are already expert in dealing with challenges.
Were you offered nuedexta? It is a medicine for emotional lability / PBA but PALS have reported for a while it seems to help bulbar symptoms for a while. A recent clinical trial supported that It is not a miracle but it seems to help.
Looking forward to getting to know you!
Um, I think that's a great idea. Being the newbie here, I wouldn't have a clue how to do what you suggested, but I'm all in if someone does it. Just let me know where and how to get there. lolI hope things are going as well as possible for you, Katy.
And, I don't mean to interrupt your thread here, Katy.
Reading through it, and seeing others who have
started ALS with Bulbar Onset,
made me wonder if this might be a helpful idea.
Perhaps there are those who do have Bulbar Onset ALS who would
like to gather their names together, since we start out living the ALS
experience in a less common way.
Just an idea for support, sharing, and community.
Hi, Laura,Dear Katy,
I'm sorry, I didn't mean it to sound as if you yourself should try to start
some kind of gathering up.
I had just been thinking, as I read your thread, and saw other members with Bulbar Onset ALS.
That was why I apologized for interrupting your thread.
I didnt want to be "hijacking" it.
I guess I was basically kind of musing out loud, and just throwing the
idea out there, just to get it out there, and see if people thought
It might have merit.
So, No, I did not mean for you to get it started!
I haven't been doing really well lately, so it may be a little while,
but I hope to try to get a thread started about it before too long.
I will be sure to let you know when that happens!
Thank you for your patience in my having used your thread to mention the idea.
Dear Laura & Nikki,Also, Dear Katy,
I know so very little about it, and I do not know any details about how it works,
but I believe there may be
some types of programs that if you qualify, you can get the
Nuedexta at greatly reduced cost.
I think it may be even a combination of programs/plans that help you bring the
cost down the most.
I will try my best to get more information for you about it, as soon
as I am feeling more up to it.
Perhaps it will be applicable to you and your situation.
So, while I don't want to give you false hope, there is a chance, I believe,
That Nuedexta may not be entirely out of the picture for you.