Friday, August 1, 2008

The Day MS Found Me

It was August. The day was sunny, hot, and humid - nothing too unusual. I woke that morning with a strange feeling in my feet. The best way I can describe it is when your foot feels like its asleep. I had felt this feeling before, but blamed it on poor circulation. This time, however, it was different. When I stood up, I felt dizzy. It was hard to keep my balance...I felt a fatigue that I have never felt before. Was it the flu, I thought.

The symptoms were just too much for me to go to work. I called out and told them I was feeling ill. Well, the only thing I could do was go back to bed. My mom told me, later that day, that she had heard that there was a virus going around. Naturally, I thought thats what I had. For the next few days, I rested, ate soup, and drank ginger ale. Nothing helped. I then began to vomit. No matter what I tried, food would not stay down. I had to go to the doctors.

Well, the outcome of that visit was treated as just a virus. The doc advised me to keep doing what I had been doing all along. I was sent home without any meds. The fatigue was so strong that I could barely stand up for a minute before being too tired that I had to sit down.

It was enough to drive a person insane.

About 3 weeks later I saw a neurologists and she said she thought it might be Multiple Sclerosis. couldn't be, I thought. I went for an MRI of the brain and spine and sure enought the labs showed white spots on my brain and lower spine.

I was in denial. I needed a second opinion and didn't get one until January - 4 months later. I had enough of the imbalance, problems walking and feet tingling.

My new neurologists was more compassionate and understanding. He told me about Tysabri and said he believed I was a good candidate for the medication. After I thought about it for a month, I decided to go on it.

I currently have had my 20th dosage. I thank God every day that I am healthy and that this medication has not harmed me. I pray for a cure soon and have faith that it will happen in my lifetime.

Monday, July 21, 2008

Today's the Day

Hello everyone. I am new at this, so please bare with me. I never thought I would actually be blogging about my MS life. I have hid my disease for so long. Not many people know I have this disease. I can count the people who know using my hands. There is my mom, dad, brother, husband, best friend, and 3 co-workers. Eight people. I have a big family so eight isn't a lot. My grand parents, aunts, uncles, cousins etc...don't know. I have been contemplating how I should tell them, but it's very hard.

A part of me, doesn't want to tell them because I don't want them to see me differently. Just going to the internet and typing in MS can be very over whelming. And I know that's what they'll do because that's what I did when I found out I had this disease. I was horrified instantly thinking that my life was over. I thought I was going to be bed ridden for the rest of my life. But soon I found out, through my doctor, care nurse, and others living with this disease that life with MS is manageable.

At this time, I' m feeling good. I have not had an attack in two years. I occasionally feel fatigue and some pain in my hands and knees, but overall I am doing well. I have been taking Tysabri for the last 18 months. I can honestly say that this medication has agreed with me. I have never had any weird reactions or side effects from taking it. This medication is fairly new and is still being watched closely by the FDA . During it's clinical trial two people died from PML (progressive multifocal leukoencephalopathy). A severe progressive neurologic disease that can lead to death. I know what your thinking, why take that chance.

Trust me it wasn't an easy decision, but at the time I was barely able to stand for more then a minute and walking was almost impossible for me. My neurologist told me about this medication and explained very clearly about the pros and cons of being treated by it. I thought about it for a long time asking my dad and husband about there thoughts and searching about this medicine any where I could. I finally decided that I didn't want to feel the way I was feeling and that I could atleast try it and see if it could help. Needless to say, it has. I am grateful for it.

It has brought me back to being me again (I won't say normal life because what is that any way?). These days, I am feeling good and thank God everyday for just being able to do the little things that many take for granted. I don't want to be rich, famous, or a celebrity. I just want to be able to live my life how I choose. And nothing, not even MS, will stop me! I have MS, but MS doesn't have me!