I got my diagnosis...

[Amanda]

Originally Posted by elfygp

Amanda, that sucks! But from all your previous posts I've read over the past year or so I know you're a strong woman and will adapt to this. I'll be keeping an eye out for fund-raising events for MS around Philly, they're a great way to connect with others who have terrific stories and to help others that aren't doing as well. Either way, you have a huge support system here. And your little boy looks so happy! I love seeing all his cute outfits. I hope he has a Phillies jersey!

Thanks everyone- really!! Like I said, I am still in the denial stage and of course I am angry, scared, you name it. They want to put me on a drug that will be painful and may harm my liver. I have an appointment for a 2nd opinion next week.

Erin- I'll be in touch!

Kate, this is for you (you gotta love his crazy expression!):

[spotty4]

Go Phills!!!!

[Kristie]

i was just wondering if you'd heard anything....took a look at your facebook and didn't see anything there, so figured i'd stop back here and see if there was any new input. I'm surprised i hadn't seen this a few days ago!!

i was hoping it wasn't something as impacting as MS but thank the lord they FOUND something so it can be treated or maintained...if you're in the early stages, then you can impact it enough that it'll eventually and hopefully be of little impact to any change in lifestyle you have to make!

I have a friend of my mom who was diagnosed far earlier with MS than my mom was with cancer and she's still moving and shaking like a champ! she had a hard time about 20+ years ago as they were coming out with newer and greater drugs to help but they must have found the right cocktail for her cuz at 60+, like i said, she's walking theme parks with my sister and her family and enjoying retirement in Florida...she just keeps on truckin.

If you like, i can ask her some questions for you? considering her length of diagnosis and treatment etc, she might have some suggestions. i really have no idea, but i'm willing to ask her

[elfygp]

haha thanks Amanda! His expression literally made me laugh out loud. He's like daring the Phils to see what happens if they lose...

[madlibs]

Good Lord. My mouth literally just fell open. I am so sorry to hear about this, Amanda. I know I'm not in Philly, but I am just a quick flight away. If you ever need anything, just let me know. I'm a kickass babysitter.

Thinking about you... lots.
Sending lots of hugs.

[Amanda]

Well, I just went to an MS seminar tonight with Nick. The terrible thing is that MS manifests itself differently in everyone. I don't know how bad I have it until I get new MRIs in February. I am going to go on a drug called Copaxone which is a daily injectible. Having the extra expense every month for the meds is not going to help us financially.
I only know how much a competing drug is and without insurance it is $7000 for 3 months- can you believe that? At least I have insureance but it isn't covered in full.

[Regina]

There are a lot of private companies out there that offer co-payment assistance. We just found out about them last year. For basically, forever, we probably would have qualified, but we weren't told about them until I freaked out when our insurance stopped paying for the medication that my son is taking. So, crying, I called the nurse at the office and asked if there are any other kinds of meds, etc. that would be equivalent. I had no clue how we were going to do it....that's how expensive it was going to be. Well, turns out there are a lot of private donors to help with your copayments, you just need to ask. No one ever offered the information because they thought we could afford everything with hubby being a pilot. Quite frankly, I don't even see how someone making 500,000 could pay for some of these medications...

[Hokuspocus]

Keep asking around and talking to people who are in the same boat you are in. Also asking at dr's office's sometimes works, I know before dh and I got married I needed another shot to float me through the wedding and honeymoon before I could get on his insurance, and the nurse was super nice even called the drug company and since the two shots that she had in the office were going to expire in a month they just gave them to me! So don't give up I know the stuff can be expensive but keep looking and asking people for ideas!

[jr_lenz]

Amanda I'm so sorry. If you need anything please ask, we are all here for you.