Monday, July 23, 2007

Letting Go Of My Fear

After injecting Avonex into my muscle weekly for a year and injecting myself daily rotating between my stomach, arms, thighs, and hips for three years with Copaxone. My symptoms are still slowly worsening, but I am still bless because I continue to have use of my legs, eyes, cognitive, and coordination. I’ve lived with pain since the age of 28 and was told I had Fibromyalgia and Chronic Fatigue Syndrome until an MRI and Spinal Tap showed I have Multiple Sclerosis. I honestly believe my problem was Multiple Sclerosis from the start, but that is irrelevant now.

The recent pain I experience would have knocked an elephant down. The pain was in every fiber of my body I became desperate to make it stop. At the present moment I am thankful to be pain free right now, the morphine patch is working.

I never ever ever want to feel that kind of pain again. My Neurologist scheduled me to have Solu-Medrol infusions every month and she also suggest I try the new MS therapy drug Tysabri because it is proving to be effective for MS patients. My hesitation of trying Tysabri was because of possibly contracting Progressive Multifocal Leukoencephalopathy (PML). As I thought about it all of my drugs have severe side effects. Just last year the chemotherapy drug methotrexate started out wonderful for six months before it went toxic. If I was willing to take chemo to feel somewhat normal after being told I could get cancer. Why should I not try Tysabri to give me hope for a better quality of life and the feeling of normalcy? I don’t know if it will or will not work for me all I know is I have decided to try Tysabri as my new drug of choice to slow the progression of my multiple sclerosis.

Thank you Lauren, you were my angel at a time I needed one in my life. Watching you on your video gave me hope for the day when my MS progress to that point. You are a true inspiration!

Tonight I did not inject myself with Copaxone and I will not be taking my schedule Solu-Medrol infusions. I have to be thirty days free of steroids and Copaxone before I can start Tysabri. According to my calculation I should be able to receive my first Tysabri infusion in September. I would be lying if I said I didn’t have fear about the change in my medications and MS therapy drug.

Having HOPE is better than letting FEAR stop me from putting up a good fight living with Multiple Sclerosis.


Lauren said...

Awww D... I'm so happy you have hope once again in your life.

Thanks so much for your e-mails, but I'm especially happy that you have elected to choose Tysabri as your MS therapy.

I pray that you receive the fabulous results that I did back in early 2005 with only one dose of Tysabri.

This time around, it's kept my MS stable at least, and with each new infusion I receive (my last infusion being #10), I can hold onto that hope of making some improvements once again.

Again, I am SO happy for you!

Lauren :)

CC said...

Good Luck with Tysabri! I just had my first infusion and look forward to many more.

Blinders Off said...


I hope Tysabri continue to work for you and the improvements you are experiences continue. Once again THANK YOU for giving me the courage to try it.


I am still apprehensive, but I believe it is time to see what Tysabri will do for me.

Christine Montgomery said...

I keep my fingers crossed for you, and hope that the new medicine is working. I read many articles about Tysabri and seems that Progressive multifocal leukoencephalopathy complications are very rare, even now, several years after the drug has been introduced.