Here we go....

[BlueandGold]

Well folks I was diagnosed today at the WVU ALS Center. A big part of me knew this was coming but the absolute hardest thing was watching the tears streaming down my wife's face. I hate what this is going to do to my family. Just found out last week I'm going to be a grandpa in September. So surreal. After such horrible news, we left the building and the sun was shining and people were going about their days as usual. Reality hits hard. Life goes on all around you yet you shrink into this "other world" and suddenly I'm on the outside looking in. So strange. They gave me a script for Riluzole which I found out at my pharmacy will cost me $440 after insurance. At least they gave me the "letter" and copy of the EMG to take to the Social Security office to apply for disability.

I'm going to encourage my wife, Julie, to join the forum so she can get help from all you wonderful CALS out there! I've followed this forum for awhile and all I can say is that all of you are amazing and exceptionally strong people. I hope I can apply what I learn from this journey to help others too. That's the one thing that keeps me going is being able to help others. If you guys want, I'll take over responding to the DIHALS threads

More to come I'm sure.

Vince

 

[Nikki J]

I am sorry Vince. Very. There is lots of life to come but I know this is so hard. Really investigate riluzole costs. I had to pay cash recently due to incompetent mailorder. 30 days for 185. Walmart with coupon from goodrx. Start with goodrx.com. If I had not had coupon cost was 235.

 

[affected]

I so remember the feeling when you are told this news, I'm so sorry Vince, and as you already noticed, it's not just you that was diagnosed, your family were as they love you.

I'm determined now, that even though I'm very teary today myself, I'm going to finish the final edit on the newly diagnosed sticky that has taken me far too long to complete!

Just be gentle with yourself and your wife. We would love her to join as she needs a very different kind of support to what we will give you now.

 

[Nuts]

Vince, I'm so sorry. I was hoping you'd get a different diagnosis. Yes, the shock of this news sucks the very air out of you and immediatly alters everything. Try not to let it. Try to live the life that you have while you can. I think one of the truest things I've read yet is that we now have an altered real life. I hope your wife joins us. She needs this too.

 

[JimInVA]

Vince,

You've been here reading, so you know. We are all here for all of you. I hope you are able to find the so very good things that are still ahead of each of you in each new day... there are so many if we simply look. Our best to you...

Jim & Darcey

 

[affected]

I've put the new sticky up, it may help

https://www.alsforums.com/forum/gen...-ve-just-been-diagnosed-what-do-i-do-now.html

 

[krnNdug]

Vince,
Sorry to meet you here, but it is such a great place for us. I remember that day so well also. I would recommend that you and your wife seek out an ALS support group. We didn't want to go, even waiting in the parking lot hoping for a reason not to go. Well we went and it has been such a great thing. I know it may not be for some, but I think very highly of them.

I just looked and didn't see an ALSA chapter in WVA, but MDA is in Charleston. I go to an MDA clinic and ALSA support group and both special events so don't feel bad if you go to one or the other or both.

If you were closer I would suggest you drove to DC for the ALS Advocacy Day in May. There will be a lot of information and resources available.
Again, sorry you are here.
Doug

 

[Vincent]

Greetings from another Vince. I completely understand the concern for your wife, I've been struggling with that myself for a while. There is lots of help from some very good people here. Sorry to meet you here.
Vincent

 

[Jeanau]

I'm sorry Vince. I know that it is hard to take it all in. You and your family are in my thoughts and prayers!

 

[BlueandGold]

Thank you all so much. You are a truly amazing group of people.

Vince

 

[patrick123]

To this day I remember every single word my doctor said when he told me I have ALS. I was in total shock. ALS was never a consideration for me.

 

[JimInVA]

Vince,

Your comment about the cost of Riluzole kept replaying itself in my mind. Our co-pay after insurance is $160.00... and zero after we meet max out of pocket (which we are almost at). My own GP recently made me aware of a FREE app for my smartphone called GoodRX. It is an app that includes discount codes for medicines that you need that can be used at local pharmacies. It will even tell you what costs each pharmacy has on the medicine you are looking for. I have personally used this for two medicines for both Darcey and myself and have had no issues with two different pharmacies. When I look up Riluzole, 50mg, Qty 60 on GoodRx, the lowest local price is $184.00 at Walmart. That is considerably lower than your current co-pay. I suspect there may be price differences depending upon where you are located... but I'd sure encourage that you at least look...

Jim

 

[MaxEidswick]

>Well folks I was diagnosed today at the WVU ALS Center.

Hi, Vince -- sorry to welcome you :-(



Max - Thursday, April 16, 2015 10:45:18 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[BlueandGold]

Was fine yesterday but so emotional today. Not because of the diagnosis but because of the overwhelming compassion and support that is pouring in from everywhere. Again and over and over, thank you all so much. Nikki, a great big bear hug to you! The advice on the goodrx.com worked and saved me $254! Also, think maybe I could re-register under a different name? I can't change my profile to indicate I am diagnosed and I don't want to confuse people with future posts.

Vince

 

[lgelb]

I'm sorry to welcome you and your wife, Vince. You two obviously have a strong bond for the journey ahead.
--Laurie