Newly Diagnosed (Bulbar Onset)

[Janie H]

I have had bulbar onset for three years,keep fighting,don't give up

 

[fionae]

Dear Katy,

I am sorry I have not gotten back to you sooner.
I didn't see your post to me until just now.
Unfortunately, I haven't been doing too well the last few days, but this too
shall pass.
I am not sure how much wisdom I have to offer you, but perhaps I can offer
You some encouragement, and some "tips" I have run across.

Again, I'm sorry for the late reply.

I hope I will be able to help.

You probably can't "private message" yet, but feel free to go to
my Profile Page, and leave a "Vistor Message".

Take care,
Laura.

 

[Ells]

Dear Katy,

I'm sorry for what you're going through and for all you've been through. You've shown such strength & courage, keep hold of it.

Good idea to write down your questions for an appointment. Hope you get on well tomorrow.

Ells.

 

[fionae]

I hope things are going as well as possible for you, Katy.
Truly.

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.

Sincerely,
Laura.

 

[Nikki J]

Laura Feel free to start a thread perhaps in the PALS section You can title it something like Discussion for bulbar onset PALS or whatever you wish

 

[affected]

I think that is a great idea - start a thread for those with bulbar to discuss some of the huge differences there are from early in the disease process. Great idea Laura!

 

[Atsugi]

Laura, that's the best idea I've heard in a very long time.

 

[Katy Sunshine]

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!

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.

 

[Katy Sunshine]

I hope things are going as well as possible for you, Katy.
Truly.

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.

Sincerely,
Laura.

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. lol

Thanks,
Katy

 

[Nikki J]

Well always get your doctor to appeal denial. Did you report emotional lability?

But other than that it is a combo drug of dextromethorphan which is available as an otc cough syrup and quinidine a heart medicine. It is not practical to get a quinidine prescription because of the dose available not matching. But dextromethorphan is the ingredient that helps. The quinidine is to deliver it where it needs to go. How beneficial just dextromethorphan is is questionable but some think it helps. My sister takes it and thinks it helps the emotional lability. Her swallow and speech are long gone. Whether nuedexta which she did take at first slowed things down I don't know

 

[fionae]

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.

Warm wishes,
Laura.

 

[fionae]

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.

Sincerely,
Laura.

 

[Nikki J]

Good point Laura. Katie look here
https://www.nuedexta.com/savings

Let us know what you find out

 

[Katy Sunshine]

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.

Warm wishes,
Laura.

Hi, Laura,

I sure did not think you were hijacking anything, sweet lady. If there's anything that can help anyone, I'm happy to have it on my thread. I'm sorry you are not doing very well. <saying a quick prayer for you>

Katy

 

[Katy Sunshine]

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.

Sincerely,
Laura.

Dear Laura & Nikki,

Thank you for the suggestion. I will most certainly give it a shot and will let you know what I find out. Y'all have been so very helpful and I'm quite grateful.

Sincerely,
Katy