About Me

  • Gender Female
  • Age 48
  • Relationship Divorced

My Story 1 Appreciate this

I was first diagnosed with MS in May of 2000 when I had an episode of optic neuritis in my left eye. They started me on avonex, then switched me to copaxone since I was having too many side effects with the Avonex. I contacted my old neurologist, since he was not only a peer professionally but also personally. I had known him from working out of the hospitals, then having him as my own Dr when I had suffered a back injury as well as when I had suffered multiple concussions during my first marriage. I was informed by him that there was nothing to substantiate the diagnosis other than the optic neuritis since neither my MRI's nor my CT scans had changed since 1991. In 2002, I had decided to get my class A CDL to drive tractor trailer cross-country. Towards the end of 2005 my Dr took me off the truck. I had skin biopsies done on my lower back. Because of where the biopsies were taken, bouncing around in the truck was not allowing them to heal properly. January 10th of 2006 I woke up feeling like I had a stroke or a TIA. I have been an EMT since 1990, so I knew what to look for. I got myself into the bathroom in order to assess myself. I had all the signs including slurred speech, which I found when I called up my neighbor to ask if they could take me to the emergency room. Off to the emergency room I went for the tests to be done as well as whatever treatment they planned on doing. This fairly young blonde female neurologist came into my room. After introducing herself, she said I have good news as well as bad news. I of course braced myself for the worst. The good news is you did not have a stroke. The bad news is that you have MS. I was not in complete shock but it still devastated me. I already knew all the ups, downs, ins outs etc. It took all I had not to scream, or have a meltdown right there in the emergency room. I knew that if I did, that they would find a nice padded room for me in the psych ward. I left the emergency room with a couple of prescriptions & an appointment with my new neurologist. It seems like it was a different person when I think about that day now, although its not. Then life with MS truly began. I began to completely focus on what I could do to improve my well being. I changed my diet drastically & found various foods that seem to trigger it for me. I left NY & went to Arizona & started a life there. I got married for a second time & a few days after had another flare up. My new neuro out there suggested Novantrone. I was willing to try it since I couldn't do the injections due to the skin biopsy results. Chemo was hard on me physically, mentally, emotionally & socially. My marriage suffered irreparable damage & we ended up divorced despite the fact that we both still loved each other. After my 4th treatment I contracted bacterial meningitis & almost didn't live through it. I left Arizona & went to California in order to continue to work for a wonderful boss. I was also going back to school in order to work in the operating room. I had seen enough of picking up the pieces, I wanted to be on the other end & put them back together. I was top of my class & they loved me at the hospital when I was doing my internship but MS had other plans. My boss passed away due to cancer & after a 3rd round of meningitis & 3rd type & a flare up on top of it, it was time to come back home to NY to be closer to family. I miss the warmth & sunshine of the west coast because I felt better in the warmer weather. The cold makes me hurt everywhere. I'm truly home though here in NY. I used to rack my brain for hours, days & weeks on end about why I got picked to get diagnosed with MS & what was the trigger factor. In fact I know of several MSers that have done the same thing. I've seen the progress that research has made in the pharmaceuticals available to us even if I can only take the out dated one that's rarely used anymore & now an oral medication. Despite the obstacles that I've run into along the way, I seem to always have an optimistic attitude about it all. When it knocks me down I get back up because I refuse to stay down. I may have MS, but it doesn't have me. If your new to the MS world, welcome to your new life. Stay positive & don't allow it to become a dark shadow that consumes you. I've learned that everything happens for a reason even if I don't understand it at the time it happens. More is always revealed. Ask questions especially your Dr & don't be afraid to ask anything. If it's not something you feel your Dr has explained completely or it's uncomfortable ask one of us that has MS. Someone has been through it before or knows someone that has been. You are your best advocate because only you know how your body feels on a daily basis or what it should feel like & doesn't. One day we will have a cure & I'm hoping that I get to see it happen!

My MS

Type of MS Relapsing-Remitting MS (RRMS)
First experienced symptoms2000
First Diagnosed 2000
Symptoms Fatigue, Numbness, Walking (Gait), Balance, & Coordination Problems, Pain
Treatments Diet, Vitamin D, IVIG

Interests

Living Well with MS Caregiver Support, Emotional support, Healthy living, Insurance and money matters, Healthcare, Mobility and accessibility
Getting Involved Walk MS, Advocacy, Volunteering
Research Research news
Hobbies and other interestsReading, writing & drawing

My Activity