the next step

This video pretty much sums up how I've felt about clinical trials for MS Drugs. I've always been leery of that option especially since there are always commercials for law firms saying "have you taken *insert drug here* in the last 2 years,have you experienced *insert horrible side effect or death here* call this 1 800 #"

I met with my new neurologist yesterday. I began the appointment meeting with the nurse. We went over my complete history so they could have an accurate account of my ms. I spent over 3 hours with the nurse and the neurologist and had things explained to me that no one has ever done before. Not only did they explain things but they explained them in "dumb people" terms. Nothing has made me more mad then when i would ask a doctor a question and get a response in doctor terms

We went through my MRI's one by one from the very first one. I was ab;e to actually see them and see where the lesions lie. Unfortunately, that also allowed me to see I REALLY am gaining new lesions every MRI :( This progression is aggressive and that is very scary.

Because of my MS's aggressive behavior, they once again want to change my medicine. This concept has always seemed to derail my life, however this time the thing that made me feel uneasy was the words "clinical trial"

After I swallowed the lump in my throat and got to here more about it... well.... i guess You can just call me a guinea pig.

The drug is called Tysabri, it's a once a month transfusion which beats the 3 times a week shots. It's actually been FDA approved since 2005 they just want to do some further tracking so it's no different then just being prescribed the drug. They will just want to track my tests, and the biggest plus is all my infusions, tests, and MRI's of the brain will be paid for. The next step is some blood work.

This new drug comes with some new risks, including contracting PML. A brain infection that can lead to death. Luckily there is a blood test that can check if I am positive or negative for the JCV Virus. the outcome of that tests will determine how high or low my risk of PML is and if I'm eligible for the trial.

I finally feel that I am with a doctor group that is going to care for me, and that makes the risks of Tysabri easier to stomach. Also on a side note, I was already getting tired of 3/week injections. And I know Mr. wonderful is getting tired of giving me shots in the butt.

We should have the results of the blood test in a few weeks so that will determine the next step.

An Update

 An Update: It has been far to long since my last blog, so here I am writing just for all my readers hehe :)

I first want to apologize for my last blog, it was a bit whiny and scatter brained, but I guess that's what you get when you write immediately after receiving upsetting news while the emotions and feelings are still raw.

Since my last post, I have seen a new neurologist in town Dr. T. who I'm still not thrilled with. However, I think i finally found a specialist to see me in Colorado. My first appointment is tomorrow which I am very excited about, but also nervous. The doctor and her staff came very highly recommended, but I'm trying hard not to get my hopes up.

I feel like my last two doctors didn't know how to treat me so they just kept giving me more and more steroids. the solu-medrol and prednisone make me feel worse then just going through the ms symptoms, and leave my looking like a junky with track marks up and down my arm since they can never get an IV in me easily.

I no longer work as a floral designer too, but my job at the NMSS is going great! I couldn't of asked for a better job. I'm meeting lost of new people; co-workers,  other MS'ers, and even some co-works who are also ms'ers :)

Lets see, what else? Mr. Wonderful still refuses to let me dump him, which is a good thing now that i need him to give me shots in my butt once a week :D That and the fact that I love him, among other reasons of course.

As far as symptoms go: everything is pretty much the same except I did have a spurt where the whole left side of my face went numb and I couldn't talk or close my eyes correctly. that was fun! I looked more drunk then ever! Also (Warning: Next bit of information may be TOO MUCH Information) I've been having issues holding my bladder, I swear I'm running to the bathroom 20 times a day. Like a pregnant women who is carrying a water hose for a child. i am now the proud consumer of what i like to call my "pee pills" so I can make it more then 10 minutes without having to make a mad dash to the facilities.

And on that lovely, very personal note; It's bed time for this girl.

i will do my best to write more often.