My journey began in March of 2014 & started offth little different than most. It all started with a routine contact eye exam to renew my contact prescription. the optometrist started the exam and asked if I'd been experiencing headaches I replied yes but it was probably from my new job. He then started telling me that my optic nerves were very swollen and could be a result of a brain tumor. My heart fell in my chest 26 with a 3 year-old daughter and he just said brain tumor?? I brush it off thinking there had to have been some sort of mistake. So 2 weeks later I returned to pick up my prescription contacts when he looked at the optic nerve again and stressed to me how serious it was that I saw a specialist Immediately Before something bad happened. So I then go to an eye institute were they said the same thing..brain tumor. From there I was sent to the nearest emergency room, where they ran several test. The last test was a spinal tap to measure the pressure of the fluid that surrounds the brain. As the was laying there terrified I hear the Dr's gasp I knew something was wrong. I was then diagnosed with internal cranial hypertension or pseudo tumor. So then I had to quit my job so I could get on low income insurance because the job I had wasn't offering insurance either.
From then I found a neurologist who preformed 8-9 spinal taps and kept a check on my brain with ctrl scans and MRI's then in the 1st week of October 2014 my neurologist expressed a little concern of finding one small spot on my brain. He said nothing to worry about though that we would simply keep a check on it. Exactly two week later while at the park with my daughter. Me feet all at once felt like they were asleep. So I go home to rest and wake up the next day numb from my feet to my knees go back to sleep the next night and woke up the next day numb from feet To hips and I couldn't walk or move my legs at all. So first I go to my primary doctor. And calls the neurologist I wind.up going in the hospital and stay for 2weeks. In the two week period of finding the first spot I had already in two weeks had 5 on my brain.
From then it was like a downward spiral It seemed like I was in the.hospital every other week. I missed Halloween, thanksgiving and Christmas. My 1st time every being away from my daughter longer than a night at my parents house.
By January 2015 I had a total of 12 Lesions on my brain, cervical spine and,thoracic spine. Finally my neurologist tells me that he had not seen a case progress as rapid as mine was in a long time, so he refers me to a MS specialist about 3 hours away from where I live.
By this time I had already been on Topamax, a few other pills, and copaxone but was still having Exacerbations.
And my mental state had done a complete 360, I went from being the life of the party with friends and a very active and playful mom with my daughter to being pretty much bed bound or either in my wheelchair. Until I met the new specialist. Who started me on tysabri infusions once a month. This month Is my fourth month of infusions and I haven't been in the hospital since March of 2015.
But now with 16 lessions throughout. I have some days that I am ok. You would think absolutely nothing wrong with me, then the next day I.can be down for two to three days. But more than anything now. My mental and emotional health are worse than ever, and with my family members having their own lives to lead. And me being a single parent I feel that no one can relate to me or even understand the way I feel. Why I cry all the time and am always sad. I try to explain but they.really don't understand. My Dr Appointments I mostly go to by myself and The one thing that has affected me the.most besides my emotional health is my.memory I forget things almost instantly. I have so.many unanswered questions and feel so incredibly misunderstood by everyone. I hope by joining this group I meet some people who have been through this And can help give.Me.a better understanding of what all is going on. Maybe someone else who needs a listing ear and kind heart.