At the age of 20-21 I was going through nursing school. I noticed numbness and tingling on one side of my body. I first waited to see if it could be stress and waited it out. It didn't go away so I went to see my doctor. He did a neuro exam, sent me to have an MRI, and ECG. He also referred me to a neurologist. First I went to this neurologist who ruled out most everything that would cause the numbness and tingling. He brought up MS so we went for a second opinion. We then went to see another neurologist who diagnosed me with MS. I started on Avonex the weekly IM injection. I was determined to fight and complete nursing school. During the next few years I would have a difficult time.
I continued to fight. I would have good days and then bad days. If I would have a flare up a round of steroids would do the trick but the more steroids I got the less effective they were. I actually graduated from nursing school got a job at a nursing home I had worked at as a nursing assistant. I had a dream to be a hospital nurse. So I applied and got a job at Parma hospital. As I kept pushing my MS continued to get worse. I would have trouble walking. I fell a lot. I had vision issues. I was becoming more and more hopeless and depressed.
When my job moved to Parma my insurance changed the doctor I had been seeing assured me the medication was working. He blamed the worsening symptoms on stress, depression, and anxiety. Everyday I woke up and the symptoms had worsened. I was having IV steroids every 3-6 months. My doctor was becoming more reluctant to give me them. Since my insurance changed I ended up seeing another doctor at Parma hospital. He is one that was recommended by multiple nurses and the hospital. I went to see the new doctor the first thing he asked was what the MRI of my spine show. My mom and I looked at each other shocked. I had never had a MRI of my spine. My first doctor never ordered it. That was the first thing he did. About a week later I had an MRI of my spine. The day he got my results he was going to surgery he had called my mom early in the morning. He said to her that my spine had multiple inflamed lesions. My MS was aggressive and mostly in my spine which wouldn't necessarily show in my brain scans. He said I can treat her but I would feel more comfortable if she went to the Mellon center at Cleveland Clinic (The other doctor said my case wasn't severe enough for Mellon center to see me). He made a same day appointment for that day. He also said that it was obvious the Avenox wasn't working. Not only that but he called the doctor at the Mellon center who he knew and who was the head doctor there.
I went to the Mellon center. They were starting me on the newer treatment Tysabri. It is an infusion every 4 weeks. They warned my parents that I was basically suicidal. Tysabri takes a while to get it approved with insurance and with the company due to the risk of PML. That was the plan but as the days went by and I was only on the Avenox my MS was worsening everyday I could walk fewer steps my mom saw it too everyday my symptoms were a little worse. She called the nurse practitioner at the Mellon center told her and so I was given the largest amount of steroids. It worked got me back to a baseline. I started the tysabri after that and haven't had a relapse since. There unfortunately was some damage to my spinal cord that limits some function today. I can still work and live alone. I do well but I still have frequent falls. I get tired very easily. Heat is my enemy.
I am here today because for some reason I had some sense of hope. I have had lots of issues trusting people. I had a lot of anger towards my parents because they stood by and watched me go down never advocating. It took a long time for me to forgive them but also myself. By the way I was about 21-24 with all this happened more than any young adult should ever have to through.
My hopes and dream are a cure for MS. Even if they could just learn to grow and implant myelin. That would be awesome. I have a dream to one day have a serious relationship with someone who I can trust who doesn't judge or treat me like my parents did. I have a dream of buying a house and having a child at least one. I have come so far in such a short period of time all this happened within about 11 months. My mom likes to say that I lived 40 years in that 1 year or actually 11 months.
I have had a lot of challenges to face. I feel like I have something to prove from other people without this disease. I have trouble relating to people without the disease plus a lot of people don't have the compassion to relate to what people have gone through even if they think they do.
What I would say to people new to MS I would say advocate for yourself. Many people are told they are crazy or depressed but don't let them tell you that advocate and fight. I would tell people don't lose hope find the right doctor and the right place. Yes stress and anxiety can cause worsened symptoms but that isn't always the reason or the case. I hope that I can help someone new with MS. I went through so much and I still work full time with a good life!