Tuesday, July 9, 2013

My name is Patti & I'm a new Columnist on the MS News Channel! Here's a bit about me:

Before I found out I have MS in 2002 I was missed Dx in 1999. I had a neuro that did all the tests of MS when my vision was spotty. All the tests, blood work, and spinal tap came back negative with very little lesions on the MRI. He said he didn't know what I had, he guessed it was MS, and wanted me to start treatments/shots. He scared me with guessing so I left his office without any medicine to help my vision. I went on with my life and the vision got better for almost for years. In 2002 I went blind in my left eye and the vision specialist helped me get my vision back with two weeks of IV steroids.

He did a MRI as well and he too was guessing on my
 results and said he wanted me to start MS treatments. I left his office on his guessing and without starting any type of treatments with him.

My sister was hearing how the neuro and eye specialist was guessing what was going on with my health and so she made me an appointment at a MS Center to see if they could give me a true diagnose. I got to see a MS doctor, he read the past medical records, looked at the MRIs, and said to me "Without a doubt, you do have MS."

I cried that day and after talking to my MS doctor we picked a treatment to start. I started on Avenoix, the first shot changed everything in my life forever.

The first shot of Avenoix gave me a reaction that caused severe nerve pain in both arms from the elbows down. Each shot I took to try and slow down the disease gave me more problems. I felt like I had the flu 6 days a week and no energy. My MS doctor didn't like how I was doing six week while on Avenoix and he took me off of it and started Rebif.

Rebif seemed to be doing ok until the third week of doing the shots. I started walking funny. I tripped on my left foot often as I was dragging it with each step.

The pain in my arms kept getting worse and my walking caused my MS doctor to do another MRI. The MRI changed my life more as well as my MS doctor. The results came back and hearing my MS doctor cry from seeing the results let me know there wasn't any good news.

"I am sorry to let you know that the treatments caused you to have a reaction and caused the disease to progress quickly instead of slowing down. I can not let you work any more and starting soon I will have you do monthly rounds of steroids and Cytoxian (Chemo)IV for a year to try and slow down the disease."

I cried hard that day because of the pictures i saw of my MRI and how I was less than three months shy of hitting my goal in my career and heard I can no longer work.

A year worth of the Cytoxian and 1-3 days a month of steroids was the best treatment with my disease. I had another MRI done in early 2004 and there was only two little white spots or lesions.
My MS doctor and I both agreed that any other form of treatments with shots for this disease wasn't going to be wise. He continued me on steroids every month until something else was released for treatment.

I went about four years just doing steroids every month and was feeling a lot better. The pain had eased up a lot and my MS doctor let me go back to work.
 worked for about six months until the MS hit me. I got severe pain wrapped around my ribs that caused difficult in breathing. I found out through MS friends on Myspace at the time and my MS doctor that I was fighting the "MS Hugs." The joke I use to this day when I see my MS doctor is the disease loves me so much that I am constantly getting hugs from it.

Tysabri was started in 2008 and I had to quit working again because of the reactions I was having from this treatment. I stayed very dizzy and constantly falling while walking. The MRI showed that the treatment was working for me but I couldn't handle the side effects of the drug. After being on the treatment for five months, against my doctor's advice I took myself off of the treatment.

Six weeks after getting off of the treatment the dizzy spells cleared up. I went back on steroids IV every month to help me try and keep the disease to stay calm. For almost 3 more years everything stayed quiet.

In 2011 I ended up with severe migraines and the MRI showed that the disease has awaken up again. I had a talk with my MS doctor and we both agreed to try and start Tysabri once again. He told me to try and stay on the treatment for at least 6-8 months no matter how I feel. The first four months was hard to handle with side effects but the sixth month MRI showed that it was working. A couple more months passed while I was on it and it seemed like my body was getting use to the treatment better. Here it is in the middle of 2013 and I just had a treatment a couple days ago without any complications and I did get to go back to work again for a few months in the Winter of 2012.
I will continue to have goals of working again each time my MS doctor tells me to stop.