Wednesday, April 14, 2010

So sorry

I am very sorry for those of you who have been waiting to hear. I am a tax preparer and as you know April 15 is the deadline so I have been swamped.

Anytahoo, how is it going, well the Ampyra has been going good. . . not great (as I, of course expected) I have a little more energy, my leg no longer drags, I don't really know if I am moving faster but I am able to go further distances. I tested it by taking my dog for a walk (a shih tzu, he can't pull too hard). The stiffness is what is kickin my butt. I tried the 5-loxin for the inflammation, don't do it. It caused my stomach to go wacky and it was not a fun experience. I stopped taking it and I'm all better so I have to find something else natural to help with the spasticity. If you have an idea let me know.

It has been 2 weeks since I started and I am improving. My expectations on the rate of improvement were much higher, but I am happy with what improvement I do have. I will soon be done with the tax season and will hopefully fill that time with a business venture I am working on but I promise not to allow so much time between posts.

Have a blessed life, I know I am!!

Monday, April 5, 2010

Feelin' pretty darn good!!

I have been on the Ampyra for 4 full days and I feel like my walking is beginning not to look so drunk. I know that the core helps with the balance but just walking from the porch to the van seems slightly easier. If you could have seen me walk at home where I just let it loose you'd know what I mean by drunk, in public I fight it so it doesn't look so drunk but in any case it has become easier. It's like when you try on that summer outfit after the winter has come to a close. . . OMG it doesn't fit. You didn't notice the weight gain but it's inherently obvious when trying on clothes YOU KNOW should fit (I know cause it's a problem I'm also dealing with). But I am noticing since I'm looking for it. Anyway, it is actually working. I have however always had back pain I do think it is slightly different though. That is a side effect, but it is one I can deal with.

I go back for a 3 week eval with my neuro on the 21st and we will see what he has to say. I must say though I have the best neuro in the world and he will not push for me to do something that I am not comfortable with or that isn't working just because it is supposed to. He generally gives me what I ask for and encourages me to do the healthy all natural first. Dr. Berger you're awesome, thanks for being mine!

I am going to have to figure out this video thing on here and post a video b4 and after.

I can't wait to start reading some of what others are saying about Ampyra, Good bad or indifferent I wanna know other experiences.

Thursday, April 1, 2010

It's here!!!!!!!!!

Ok so I finally got the script!!!! I'm gonna do the 8 and 8 time frame so I just took the first dose. I am sooooo super excited to finally be on it. I will keep everyone updated daily on how things are going and how I am feeling . . . The only side effect I am looking forward to is the insomnia. . . maybe I won't feel so ready for a nap 24-7. . .lol

I feel like a kid in a candy store. . . Until tomorrow. . . .WOOOOOOOHOOOOOOOOOOO

Wednesday, March 31, 2010


It is on the way. So I spoke to someone at Accredo 2 minutes ago and my script is being shipped TODAY to arrive TOMORROW!! It has officially taken 3 weeks and one day to get a confirmation on the actual shipment. Now that I know it's coming I'm slightly more nervous but excited. Kinda like when I was a kid and we were goin to bed early cause we had to get up extra early for a road trip to Cedar Point. I was always a little nervous about riding the Demons Drop even though I had rode it the year before. Then while in line for the first time of the day the butterflies were doin loop-d-loops in your belly. WOOOO

Updates to come. . . . .excitement to last. . . . . .check back soon

Sunday, March 28, 2010

Just when you think. . . . .

Just when you think the wheels are turning in your favor you find out they turned the wrong way. Yes the Ampyra people contacted me and said they checked my benefits and I am covered so they were forwarding the script to the pharmacy. That process took 2 weeks. Instead of them forwarding the benefit approval to the pharmacy, the pharmacy now has to verify my benefits. They said they have no information approving the med and they have to verify for themselves. Okay call me crazy but if your working hand in hand with another agency to get a product out don't you think the two agencies should swap that kind of information so time is saved. . . .NOOOOO not these agencies. Now I have to wait for Accredo to verify what has already been verified then they will contact me to verify my info then and only then will they send me the med. . . . .UGHHHHHHHHH Americas medical system hard at work!

Wednesday, March 24, 2010


I just received a phone call from Acorda. Her name is Lisa and she said 'your benefits have been approved, you copay is $3.30 for a 90 day supply and your pharmacy is Accredo'. I am one step closer to acctually receiving this med!! I have had some extra time to think, I am not rethinking taking but I am rethinking taking it. Here's where I am at. My neuro says I'll know within 5 days if it works. . .okay. . . extended use MAY allow it to work better but I think if I don't see something almost immediately I will stop.

As I said before, I try to cleanse and live all natural, this is gonna change that but I still won't take the muscle relaxers. Is there anyone you know that is 'holistic' or someone out there that takes Boswellia (Indian frankincense). For those of you who don't know what it is, it helps with the inflammation, rather than a constant supply of ibuprophen (pure chemicals). The inflammation is the reason I am so stiff. If I could find something to reduce the swelling I would be in GREAT shape!

In other news. . . .my new shoes should be here today! YAY!! I cannot wait to get a great sunny day to wear my dress and my new wedges. . . .woohoo!

Tuesday, March 23, 2010

I am beginning to wonder. . . . .

I am beginning to wonder if the rumors are true! I have searched far and wide (on the net) for a discussion board or some type of banter about Ampyra. I found NOTHING! I have, however, been hearing that Acorda lied about the meds readiness. I am beginning to wonder if that is true. If this is true it is one of the problems I have with drug companies. They don't really care about us, it's their bottom line figures they care about. . . . .Hmmmm. Here's my theory. . . .I think they said 'Okay it's ready' so they could get a count of people ready to try it. Meanwhile they are in production but just not completely yet. Anyone with me? I believe once they have a good number of patients then they will begin to distribute the drug. Conspiracy theory. . . lol. . . I know!

My frustration levels are increasing for this reason. The process is supposed to go like this. . . .Dr faxes script to Acorda, Acorda enters it in system and assigns a case manager, case manager gets insurance approval, case manager assigns specialty pharmacy to prep and ship, patient receives drug and begins taking.

Here's the steps I have completed. . . .Went to Dr for eval on 3/9, Dr faxes script on 3/9, Acorda enters script on 3/11, Acorda assigns a case manager on 3/12. . . . . . . .WTF

If this takes much longer I'm the type of person that'll say God put this delay in front of me for a reason and maybe I am NOT supposed to take this med, and I will continue doin as I have been with a few tweeks here and there. So if you know where there is someone, anyone who has begun Ampyra I'd like to hear (or read) what they have to say, direct me to their site please. . . . I will continue to keep you all updated on my path but for now . . . . . .The saga continues