MY decision to start Tysabri Part 1 of 5

My decision to start Tysabri, or Natalizumab was not made overnight.  Well maybe it was, but I think the events leading up to it made the decision for me.

Before you read anymore, please  know that I am not endorsing or recommending that anyone choose this drug, I am only sharing MY Journey, and it is a long one.

I  either made my decision to start or actually started Tysabri in 12/2009. I was in the hospital for IV Steriods AGAIN for ANOTHER MS Relapse.  I had been averaging two to three flares a year for the last 5 years.  This time I had couldn’t move or feel either of my legs.  I was beyond depressed.  I literally think I slipped into a vegetative state (not clinically, but I certainly wasn’t there mentally)

My MRI’s showed several herniated discs, my spinal cord was pinched and displaced, but I also had several active lesions from MS. boxing-glovesNo one could agree on the cause of the loss of use of my legs.  To call the doctors a team of doctors was ridiculous.  It felt like they were fighting with each other instead of FOR me.

After being hospitalized for the week,  I began to regain some feeling and very slight movement of my legs.  The five days of steroids were over and the only thing the doctors could agree on is that it was going to take some time and a lot of physical therapy for me to hopefully regain some mobility.  They discharged me and wrote orders for home health to visit me everyday.

I don’t know if it is MS, the drugs I took for MS and depression , or basic survival skills of blocking out bad memories, but the timeline is a bit blurry for me about how things happened next.  The things I do remember though are:

Being left outside in the rain in a wheelchair

We had at least one step to get into or out of our house at every door.  Navigating a wheelchair with very weak legs was hard enough, but the steps were killer.  I was so tired of being confined to 4 walls in the house and NEEDED to get some fresh air.  I begged my now ex-husband to take me outside, just for a little bit.  It was a major ordeal, and turned into a shouting match about why he hadn’t built a ramp yet.  He stormed off and left me outside.  ( I don’t blame him for his actions,  I was scared and very mean and the mood swings were insane.  He had been doing double duty with the kids and working full time and didn’t have a clue how to build a ramp)  It’s important that I share this story because I think it was the first in the series of events that lead to my decision to start Tysabri.  It began to pour outside and there was nothing I could do but sit.  I tried to wheel myself to the front door, but the stairs where in my way to getting close enough to reach the door or doorbell. No one could hear me crying or screaming for help. My youngest daughter came looking for me to tattle on her sister for something she had done.  When she found me, I don’t know who was more scared. Her or me.  I was crying and freezing.  I had never been so helpless.

My youngest daughter wouldn’t come near me.

After that night, my youngest daughter wouldn’t come near me.  She thought that if she touched me, she would break me more.  Looking back now I think she may have been a little bit afraid of me after watching me experience a couple episodes of “Roid rage”.   Maybe she was afraid that I was dying.  This memory, I can tell is too painful to relive or think about too much, So I will try to focus on the positives and leave it at that.hug your kids  It was time for something to change, if the doctors I had were not helping me I would find one that would.

We are supposed to make our children feel safe and loved, not afraid!

OMG what had I done?

I will post the next part soon.  I never knew that writing could be so therapeutic and I am working on laying those demons to rest.


MS Multiple Sclerosis Diagnosis

Many people that have been diagnosed with MS can look back in their lives and identify times that they had MS symptoms long before they were diagnosed with the disease.  When I tell my story though, I am only speaking about the events directly leading up to my diagnosis.  In hindsight, I can tell you that I am grateful for the way things played out, but I certainly wasn’t when it was happening to me.

I was at work and a coworker friend of mine was kicking the back of my knee with her foot as we were walking down the hall.  I don’t remember how many times she did it, or how many times I avoided tripping, but I do remember the one I went down on.  Not only had I torn my nylons, but two fingers in my left hand went numb within the hour.  It seemed strange, since I don’t remember landing on my fingers, but I shrugged it off.  There were more important things to think about like how was I going to get even with Michelle for bruising my pride.  I went to sleep that night, figuring the numbness would go away in the morning and didn’t give it a second thought. When I woke up the next morning my entire left hand was numb, and by noon from my fingertips to the middle of my forearm was numb.   Over the next few days the numbness continued to spread up the rest of my arm and down the left side of my body to my left knee.

Call to the doctor

The order of events that happened next are kind of a blur to me.  Maybe because they happened so quickly, maybe because I was terrified and tried to block them out, maybe because they happened almost 20 years ago.  Within a week my doctor ordered Evoked Response tests, 3 MRI’s, a spinal tap, and enough bloodwork to save a nation.  Then the call came.  “We need you to come into our office to discuss your test results, TODAY.

As I type this, the hairs on my arm are beginning to stand up, and I can feel my breath catching in my throat.  I don’t remember the words she used to tell me I had Multiple Sclerosis.  I remember the silence that followed and the hopeless and pitiful looks she and her nurse were giving me.  Somehow the numbness that I had been feeling during the past week seemed to take over my brain and my emotions.  (pun intended).  The doctor ordered a course of steroids for me and gradually I started to regain feeling in the reverse order that I had lost it.  First my trunk, then my chest and shoulder, and eventually my arm except for my left hand which is still numb.

As I mentioned earlier that was almost 20 years ago, but that is where it started for me.  In the last 2 decades I have learned and experienced so many things due to this disease that I think may be helpful to share with others.  Living with MS is not new to me, but blogging is.  If you’re willing join me on this new adventure of mine, please follow the blog, or Look me up on Facebook. Grace Fullnot (same picture I use here) If you do add me on facebook, please send me a short message saying “Hi”, I saw your blog, or something to that effect, so that I know you aren’t a robot.

If you are reading this because you have MS or think you might, please know that yes it can be scary, it’s ok to be mad, but it really is NOT the end of the world! There are many resources out there to help you with this!!!!!!