My Column today is about how I STOPPED TAKING AMPYRA! I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live independently.
(Stan is the Publisher of MSnewsChannel.com)
I've been getting some HARD days Stan!! The hardest in my 20 years with ms. There was an overlap with my financial aid & I ran out of Ampyra on Sunday.
I've been on it since 2006-when it was still in clinical trial & have never been without it.
Don't know how long it'll take me to get back to my normal but the journey back has started.
My lesson learned: NEVER run out of Ampyra!
Tell us more about what happened when you ran out of Ampyra
No problem! You're sweet, I needed that after the week i've been thru... Let's see, since no Ampyra: @ 1st I just needed help doing things i'd been able to do before: getting in & out of the bathroom mainly & have been unable to get in the car since Tues-driver or passenger. I normally live independently (in a scooter full time), w my kids w some help w cleaning, laundry, etc. i could do nothing. At one point-Wed afternoon I think I had to call the firefighters to get me off the couch & back on my scooter. Then by Wed night I could no longer get to the bathroom @ all, couldn't even use a stand alone 3-in-1 commode. That's when my sister bought me diapers. I had had several accidents by then. I also fell trying to transfer from scooter into bed & had to call my boyfriends again to get me up. On Wed my kids go to their dads but my son had the flu so stayed w me Wed night so I wouldn't b alone. By Thurs I knew I couldn't b home alone & my son needed to go to his dads. (On Wed I knew my funding had been approved & my Ampyra was due to arrive Fri via ups!) So Thurs mid morning my mom came w plans to stay till I was 'back to normal'. Thurs was a horrific roundtable of diaper changes & sitting around-mostly in my scooter as I was afraid to transfer to the couch by then. Fri comes & we're all just holding our breath waiting for ups. Finally comes around 1.30 & we're crying @ this point, tho having no idea how long it's gonna take me to get back to normal as i've never been off it since 2006. So I take 1 & lay down. Later yest evening I took another Ampyra. Well I woke @ 2am having to pee & did so in the diaper but didn't want to wake my mom to change it, so I proceed to do it myself! I thought 'give it a try' so I frikkin got onto my toilet!!! So... I take another Ampyra & proceed to dress myself. Mind u it's been a diaper & pj shorts since Wed. I go back to bed till 5.45, use the restroom & now i'm dressed & on the couch waiting for my mom to get up so I can shock the shit out of her :)!! After just 2 (well now 3) Ampyra my nightmare ordeal is over. It was a frightening realization of what my life might b like if not for Ampyra but one that'll I will never experience again cuz I will NEVER let myself run out of a medication apparently critical for my independence! And that's my Ampyra story. If you're on it NEVER run out & if you're not but have an idea it could make your life a little easier, walking or not, talk to your Neuro about trying it! For me, I now know, it's a miracle pill.
I'm confused Jennifer! I thought Ampyra was just for walking?
[JENNIFER]That's what it's called, The Walking Pill, but I haven't been able to walk since 2010 pretty much & I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live indepently. Thx Stan! I'm just so lucky that we live in CA now & my sister lives 5 houses down & my mom's about a mile or 2 away. I could NOT have gotten thru this without them!!