MS and Me

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I was diagnosed with MS on October 1, 2014.

It all started when I woke up one morning in April of that year with extreme dizziness. It was so bad I could hardly walk to the bathroom. I managed to get myself moving and ready for work and even drove to work.

That day was a hard day for me. The world was spinning and I felt like I had no control over my body. I worked a full 8 hour day and when I went home I was so afraid the police would think I was drunk so I went slow and paid really close attention to the road and other traffic. I knew I could make it home but I also knew something was seriously wrong with me.

I cried the entire way home and when I finally made it home, I was relieved that I didn’t hurt anyone or even myself. The next morning, I told David  that something was wrong and I really needed to go to the ER.

He took me to the emergency room and they started doing tests. They couldn’t figure it out and after many hours decided I needed an MRI. After the MRI, the doctors came in and asked me if I had been out of the county? I said no, but we were just in Arkansas, could that be it? They told me no, but that I had developed lesions on my brain. They were different then they had ever seen. There were several around 8 total and they weren’t small ones. I was scared and I think David was too. They explained to me I’d have to see a neurologist and they set me an appointment with Dr Baker.

Dr Baker was an older gentleman with many years in the field. He was awesome and so was his staff. He did many tests and told me even he as a neurologist had never seen anything like this. He told me not to worry (like that wouldn’t happen) and that he would figure it out.

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He set me appointment after appointment with many doctors even an Infectious Disease doctor that specializes in TB and Aids. We ruled everything out. I didn’t have TB or Aids or any other underlying disease. From there I was sent to an MS doctor. Dr Husain. She was and is the best doctor. She did some tests and couldn’t figure out if it was MS or not so she set me up for a lumbar puncture (Spinal Tap) . That was the most painful test I have ever had. They had to knock me out for it because it was so painful.  A lumbar puncture if where they tap your spine for some fluid and then test it. I spent the entire weekend after the LP crying, hurting and in so much pain I thought I’d die.

I begged David to take me to the ER. They were so sweet there. They helped me, kept the room dark let me lay on a pillow in the waiting area and everything. When I told them what I had done they knew exactly what I needed. I needed a blood patch.

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A blood patch is when you give your own blood and at the same time they run a catheter in your spine where the lumbar puncture went and they take your blood from your arm to your back. I was in so much pain because I was leaking spinal fluid. It was terrible. (I didn’t even know that could happen)

As soon as they filled the leak with my blood my head stopped hurting and I felt about 75% better. It took me a while to feel 100% but wow it helped me a lot.

When I went back to Dr Husain’s office for the test results David was with me and she said she was 100% satisfied with the test and I did in fact have Multiple Sclerosis.

I began crying, looking at my life and seeing it end right there in her office. I saw a walker and wheelchairs, someone having to feed me, someone helping me with everything and I looked at David with devastation on his face and all I could think is what kind of burden I’d be for him. What would happen to my life? Was it over? What would I do?

I only ever really knew about MS from people or books. Seeing what others had gone through I just knew it was not me. I wasn’t MS, I didn’t have MS, but I did  and now what?

First thing I did was call Dr Baker. He confirmed yes, I did have MS. I was put on medicine right away. Copaxone injection 3 times a week. 1 year into that medicine and I was not getting any better. I changed to Gilenya. Takeing it everyday. Testing every month for 6 months. It started to affect my liver. I was so scared. I wasn’t getting better, the meds were not working, now what?

She put me on Aubagio.

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The side effects to this medicine happen in the 1st 6 months. My hair fell out. They say thinning hair, but I was balding. I had horrible tummy issues and felt sick almost all the time. After the 1st 6 months were over I started to feel better. My blood work looks good and my hair is really full again.

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The effects I have with MS are extreme fatigue. Sometimes it is so bad I can barely get out of bed. Even walking from one room to another makes me need a nap.

I worked a full-time job during all the testing and stuff and all I went through with the doctors and managed to run a normal life and house. After I lost my job in July of last year my MS took a small turn for the worse. The fatigue started creeping in stronger and stronger. Headaches daily. Depression 100% present.

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Living with MS is a daily struggle. I fight my body every day. I tell my body to get out of bed every morning. I stopped allowing myself to feel sad about anything because I am just happy to have more days on this earth.

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I know many people have or are having it worse than me and it breaks my heart. 4 years into this disease and I can still walk by myself, talk and live a pretty normal life (aside from the many side effects of this disease). For so many others  they cannot say the same thing. It breaks my heart and they need to find a cure for this horrible disease now.

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I will never stop fighting this disease….

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