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My Story

Lena Frost 11/22/2016

I am not sure when this started. I do know that my teachers in school complained that I never stay on track, I was always a butterfly that was lost in my own world a lot. I was always tired no matter how much sleep I would get and to keep my attention in class was a problem. I wonder if this could have been cognition even then. I remember reading pages of a book and not remembering what I read, my mind was blank then I would try another time and the same thing again even twice in a row. I always prayed the teacher would not call on me for I couldn’t remember it. Whenever I did get called on she would say please stay with the class and read what you were told. So I never really have been a book worm, so what I would do for that would be read what a question was and skim the book to find the correct answer, that’s was why English and reading wasn’t my strongest subject.

I never could run fast, no one wanted me on their team again my mind didn’t keep in track of what I was suppose to be doing. I remember only one time did I hit the ball in baseball and that took a lot of concentration for another kid threatened to beat me up if I didn’t hit the ball. I remember looking at Birds or just jumping around being bored in the outfield. I don’t remember why but my sister would love to walk places I would rather ride my bike I wonder if it caused leg pain. This was kind of how my child hood was.

As an adult I still find it hard to keep my mind on things. Working in a place where you do the same thing each day was a blessing for you get conditioned and can make it work, there isn’t a lot of thinking. As I got older I started having a lot of trouble with my legs, I was told it was P.A.D. even when they would do tests then never found blood clots in my legs and with all the doctors looking at my leg discolored they never checked for much else. Then my other leg was having discomfort too and pain it wasn’t discolored at all. One time my neurologist (I was seeing him for migraines) asked what my main concern was, I told him my legs. He never did anything like it really wasn’t a concern. Even then I have wondered if I will be able to walk my whole life or not (I am still walking).

I never connected vertigo or migraines with the same disease I thought these were all different illnesses. When my legs both went numb and tingly I would think my left leg must be feeling bad because I use it more then my right. I thought there was nothing wrong with me and all these things were all different illnesses up until I was in Walmart to get dog food and my legs would not move, I was stuck in one place, I thought over how to say this correctly for I have been told it is not MS. So I believe my legs were so heavy I could not pick them up and when my daughter’s friend came to help me I was in a lot of pain, on a scale from one to ten it was 30 or 40, I cried all the way out of the store. I called a doctor for an appointment this time only my legs were my main concern.

My doctor told me she thought I had a neurological disease and I needed tests to find answers. I cried, it seemed like the first time someone heard me. Wow maybe I can walk the rest of my life I thought maybe they can give me a pill and all this pain will go away. First appointment they took 15 vials of blood from me, went back I was all normal nothing wrong. The dr. told me he had no idea, he sent me to get a test where they shock you to see if your nerves feel everything. I passed again Normal mmm. Wow! By now I was getting discouraged. He told me he was looking at MS but to find out he would need to do a spinal tap and a MRI. Within the next month I had both and checked my email messages. MY doctor wrote to me that I would need to make an appointment that my last 2 tests was showing MS and I needed to start DMT. I will tell you I looked up those letters on the Internet I was scared as hell. Did I or maybe not have MS? What is MS? What does this mean? How is this going to change my life? Can MY kids get this disease? Can I work with this? I had to wait to find out what I had or didn’t have.

I finally got to the doctor and when he came in he says you got my letter? I said yes but was thinking what did it mean? He told me so you know you have MS and handed me a packet with the name Copaxone on it. I am starting you on this and you can read the information in the packet there’s a lot of information there. I asked him if he was going to give me a pill to get rid of my leg pain? He said no you have MS there is no cure you have to go on Copaxone, this doesn’t have a lot of side affects. I will get you started by getting you an appointment with a nurse to show you how to do shots on yourself and lets go see Rose, she will get you set up. I wanted to talk but my appointment was over. I thought I would go back and talk to him more but I was done. I really didn’t think he treated me too good. I had no time to ask questions. As I thought and read my packet it really didn’t have a lot of information, it was more about the medicine itself not about MS.

As I learned more about MS I wanted to do something for the others like me. The doctors don’t have time to talk to you and they take their time to find out what is wrong. I want to share the knowledge and help people understand what MS is. I found out a lot on the Internet, I found National MS Society page and took a course through them to become a self help leader for a group we started in Mansfield, PA. We have a good group of people, since I have started this group I have heard that Tioga County is one of the county’s with more MS affected people in Pennsylvania. I am proud of what I do I want to educate people about MS.

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