Will start with the Ampyra saga. I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.
Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.
She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.
I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.
Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!
Welcome to my world!!
8 thoughts on “This-n-That and Ampyra”
ROFL at not reading the manual.. dorkus.. glad it feels better for ya, but hoping it can get fixed quickly! And your new jewelry is amazing sweetie. Hope the ‘good’ feelings with it sticks for a little longer.
and for the new nurse.. well, they need to get another new one.. give her hell Tracy.. Keep on her ass to get this shit done.. No reason she needs to be messing with your meds, heallth and sanity.. want me to knock her ass out for ya? 😉 lol
Hang in there sweetie. I’m only a phone call away if ya need to vent.. Love ya!!!
I’m still laughing about it. All this time I’ve been bitchin’ that it’s to low and… DOH!!
If it means you coming back to cali, then yes, you need to come and kick her ass!!! 😛
I loves ya!
What Kat said!
Who reads stinking manuals? But glad you finally got the height adjusted, makes a big difference, your chairiot probably feels new to you now. ♥
it does feel new. YAY! Now let’s hope nothing bad is wrong with it!! lol
Sounds like that goofy nurse needs her head “examined”…can we say MORON…lol…glad to hear your chariot is accommodating you much better and yes, who reads manuals??!
Still waiting for a call. I called yesterday and omg!! lol Looks the chariot needs to go to the shop as the motor may have an issue. OI!
I first stumbled on your site when reserching information about Ampyra. I had much better luck with it then you. I got some pretty amazing results. When I was asked to do my timed 25ft walk, I RAN for the first time in years! I am taking Ampyra only one 10 mg dose a day (half dose) instead of twice a day and like you, I have PPMS. I also had a very long discussion with my neuro about why it works wonders for some and not for others. Our feelings were that even though many of us are mentally prepared, not everyone is phyically prepared. I tried to hint at this the first time I wrote you.
You need to put this disease into proper perspective. It is a war with many battles. Some of the battles you can win and some you won’t. But if you don’t put up your best fight, you won’t win many. You need to look out for yourself above all others. It is ok to be selfish when fighting this disease. I don’t want to offend you, but I think there is much more you could be doing to win these battles. If you are really interested in knowing more and permiting me some heavy critisim, just let me know.
On the drugs for ppms, have you though about signing up for the INFORMS study using FTY 720. Same drug is already on the market for RRMS. Oral drug that works competly different from all the other MS drugs being marketed. Nice part about being in a study, they take very good care of you.
Thanks for your comment Rick, but we are all different in our disease. No two people have MS in the same way, nor do medications work the same for all.
I do not do trials as I have 3 kids and husband that depend on me, and I do not want to be the one that finds a bad side effect.
As for fighting this disease, I probably have fought harder for the last 13 years than 99% of others. I fight for my children. I never said the Ampyra did NOT work, why I am fighting now to get it back. As for being physically prepared… I do a motorized pedaler to keep my legs moving and lift hand weights and do yoga for MS.
And no offense, as I know that what I do is right for me and my battle with my MonSter. 🙂