Scariest two words
Multiple Sclerosis was the scariest two words I had ever heard come out of a doctor’s mouth.
I was sick with a cold for a little while and had recently went through a very hard break up so I thought having daily migraines was normal until I felt better emotionally and physically. After a month the migraines were not subsiding and I really didn’t get out of bed that often. I would sleep 17 hours straight and my family just thought it was the break up that I was taking hard. Eventually I went to my primary care doctor to tell him about my migraines (I am not a headache person) and he just put me on Maxalt to help decrease the pain. That didn’t work at all so I just left it alone with hopes they would stop eventually.
One day I was in my room eating a piece of pizza and I started to choke on it. My tongue started to spasm and my right side of my body couldn’t grip anything. I stuck my hand in my mouth took the food out and couldn’t grasp it. I thought I was just having an anxiety attack. My hands I thought were moving but they weren’t… I ran out to the living room to tell my aunt after spitting out the pizza and nothing would come out of my mouth. It came out as gibberish. I wanted to say what was going on but nothing was coming out right. I couldn’t text it to her because my hands were not operating. That was very frustrating. I was rushed to the ER and they did a bunch of blood tests and said it was from the migraines and sent me home…
Soon my vision in my left eye was getting darker by the day. The primary care doctor thought it was just the migraines making my vision dark and blurry. I took the initiative to go to the eye doctor after almost all my vision in my left eye was gone. She told me that my optic nerve was swollen and sent me to the ophthalmologist at our local hospital and there she was able to tell me I had optic neuritis. I had no idea what this was all I could hear were all the possible reasons and or things linked with this.
Being 22 you think you are invincible so I was in denial for a while about it and thought it could of been a one time thing. I was admitted to the hospital for 3 days and started on IV steroids. They ran CT scans and an MRI’s. Also they had a spinal tap done. My MRI had lesions on one side of my brain and inflammation on my brain stem. Eventually the doctor came in and told me I had MS. Of course my family was there and I watched their reactions because I didn’t know what it was and they all broke down crying. I am sitting there staring at them thinking am I going to die or what is going on here, why is everyone looking so sad?
He explained it to me and I still didn’t understand so I googled it after he left, I was just happy it wasn’t life threatening. But to learn that I have such a lifestyle change was hard. Being a 22 year old girl in college is hard to eat healthy all the time and be on top of all these medications that I now have to take. My friends didn’t understand what was going on with me for a little while. It took them a few weeks to come around and understand my new diagnosis. It is hard going to college and being exhausted daily. I can’t go out like I used to… I would rather lay in my bed and watch TV.I feel like my friendships suffer from this and I hate that.
Millions of things ran through my mind daily… If I am this tired how can I work and pay my bills. People that know I have this are they going to look at me like I am an alien? My sister’s friend asked what was going on with me and she told them I had MS and he said “So when I see her next does she look any different, what do I say?” That made me laugh a little.
The hardest thing for me was the weight that I gained from the steroids. After 3 months of disability I had to return to work, they were used to the old skinnier version of me. The most heart wrenching thing someone can say is wow you got fat. I began to obsess with my weight and the moon face I had got. But then I realized would I rather feel how I did or be a little bit more pudgy? They don’t know what I am going through, they aren’t me and no one will understand unless they have gone through it.
One month after the steroids I got optic neuritis again. This was not typical of MS which was a huge concern. They held off on all treatments and tested me for everything under the sun. Nothing came back with any answers, they were stumped. My repeat MRI looked 90 percent better which was also not typical for MS. So it was a waiting game for 6 more months until I could have another repeat MRI. Between that time I was back to sleeping 17 hours and back to the migraines.
When it began time for this repeat MRI it showed another site of inflammation. Finally I am diagnosed AGAIN with MS and started my treatments next week. I am blessed to have my family behind my back to support me and my friends who are there when I need to vent. Now I am on my Relapse and Remit MS journey and hopefully finally on my way to remission.