Hello my name is Mariana and I am twenty seven years old. My story starts a little like this…
One week before our wedding I woke up feeling a bit off, something I thought had to be a migraine headache. I never suffered from migraines but I assumed it was because my vision was off and I had pain behind my right eye. I still went about my day because that’s all I thought it was. While I was at work I started to notice that my vision in that eye was significantly different than my left eye and the pain I was feeling had now increased and was most felt when I moved my eye. I worked at a dental office at the time so I asked the dentist what he thought I should do or which doctor to see, he advised me that with the symptoms I was having I should see an ophthalmologist. I called my hospital and due to my symptoms they brought me in right away. The ophthalmologist took one look and said yep, this looks like a classic case of optic neuritis and we needed to have an MRI done to make sure it wasn’t ms related. MS? What in the heck was MS? I just wanted to get better as my wedding was the following weekend, I prayed that it wasn’t “whatever MS was” and went in for the MRI. Next day got a call from the ophthalmologist saying great news your scan is clear. Sometimes these things are idiopathic she said and probably due to stress. So I refused to get IV steroids assuming that it was due to stress from the wedding and let it subside on its own. Will never forget this optic neuritis episode since I walked down the aisle accompanied by it.
Again at work, while bending down to reach something I felt a strumming sensation down my spine. Although I didn’t feel pain it was a very strange feeling that I had never felt before. I did the dreaded google search and found a piece on REDDIT that a man had written about the same strange sensation and that when he went in the neurologist diagnosed him with Multiple sclerosis. I connected the optic neuritis and this sensation and freaked out. I sent my general doctor a message stating my concern and didn’t get a message back. I decided to go in and when I did so she said, “I didn’t respond because I didn’t know how to since I don’t believe what you are feeling is of any concern”. I told her I suspected MS, that I wasn’t in pain but I had a gut feeling that something was wrong. She said, “ you do not have MS, you are way too young, if you had Multiple sclerosis it would be apparent and you would be in here slurring your words”. She was wrong, and I will never forget her because she was the first doctor to make me feel like my feelings and symptoms weren’t valid.
Two beautiful years later my life had completely changed, I had a beautiful pregnancy and had delivered a healthy baby girl who was about to be one in September. I woke up with the dreaded eye pain and blurred vision once more. I knew exactly who to see this time, so I made an appointment with my ophthalmologist right away. I insisted on answers because I didn’t think that this was idiopathic at all. She ordered an MRI, which I had to go to alone as my husband was working. I sat in the cold waiting room trying to hold back my tears when I heard my name called. It was a tall man, he asked me why I was crying. I poured out everything I was feeling including my fears. He asked if believed in god, I said yes. He said, “God is in this room with you”. He said my wife has MS and she’s ok, he said you need to be strong. They placed me in the MRI and I thanked god for putting this man in this room with me and giving me a message that I would be alright too.
What has happened since being diagnosed.
In September 2019, I finally got my first appointment with a neurologist. She was just a temp because they were short staffed at that time. She looked at my scans and said, I see two small lesions on your brain/optic nerve. I was like what? What does that mean? And she said,” you have multiple sclerosis and there is no need to have a spinal tap since that would be too invasive and this is a clear diagnosis”. I started to cry because all my fears were valid and were true. This doctor was straight to the point not much information given to me rather than I should be put on disease modifying therapy and she was out the door. She showed no empathy to someone who was just diagnosed with something that could be very life changing. I let myself feel all the emotions I was feeling, my husband did the same, and when I got home I started my own research since I felt like we left the hospital empty handed. I found that it is not a death sentence and I found that you could still grow your family and have a fulfilling life. I got my big girl pants on and started on disease modifying therapy. I was put on a medication called Mylan, a self injectable 3 times a week med. It went great at first until one day I had an adverse effect happen to me. My face went flushed. I had extreme chest pain, palpitations and almost went unconscious. I called the MS pharmacist and she advised me to keep taking it, that it most likely was a one time thing and that it probably wouldn’t happen again as only a small percentage of people felt this adverse effect. I continued taking it and then it happened again.My mental health was unable to take these episodes and the ms diagnosis at one time. I felt helpless and hopeless. I spoke to my husband and told him I didn’t want to be on medication, at least not on that one. We made the decision to stop the medication and get a second opinion.
I went in to see a different doctor. She was so gentle and different from the first. She said,” absolutely not, we have to have a spinal tap to confirm diagnosis”. I had an extremely painful experience with the spinal tap, but that is a total story on its own. She called me back with my lab results a few days later which showed markers that validated the ms diagnosis. By this time Covid hit and I decided that I was going to stay off of medicine for a bit longer. I felt great, MS was in complete remission and my mental health was getting better. At the end of 2020 I went in for my yearly MRI and it showed no new lesions and that the existing lesions had shrunk in size. I was so happy. It made me feel like the little changes that I was making by eating home cooked meals, exercising and reducing stress were working. We decided to plan our second and most likely last baby. I got pregnant in late November, had a beautiful pregnancy, and delivered a beautiful baby boy. I am breastfeeding at the moment, eating as clean as possible without following a strict diet just yet. I do feel occasional mild MS symptoms. I have noticed them more when I have stressful times in life or with weather change, but nothing worth going to the doctor for. I have my yearly appointment coming up and will have to see where I stand and I will start a new game plan at that time if i need to,
If you would have asked me how I felt when I was first diagnosed, I would tell you I was extremely terrified for the future and that I felt pressured from people who knew of my diagnosis, especially by my doctors, to be on therapy. This made me feel helpless and not in control at all. Now almost 3 years after diagnosis, I have started to feel hopeful and have pushed myself to work everyday in changing my mindset to living and enjoying the present as much as possible. This in itself has helped immensely because it makes me feel so thankful for every living moment of being with my little ones, husband, family and friends. We all have a vision of how we want our lives to look like, and you never really plan for a curveball of this magnitude to be thrown at you. So I am still grieving and I don’t think I will ever stop grieving. But life moves on and every day post diagnosis gets a bit easier and you get stronger. If MS has helped better me in any way I would say it is to not sweat the little stuff and enjoy the love around me to the fullest.
My advice for someone newly diagnosed is to create a strong village around you of family, friends and doctors. But to be choosy,as you do not need to tell the whole world if you don’t want to, but you should surround yourself with a few that will hold your hand and understand your journey. If you find yourself not compatible with a health care provider, make the change. Also always advocate for yourself because in the end you are the one who is going through it. Lastly, we are all different, do not compare yourself to others diagnosed. We are all fighting the same battle but our journeys are unique.
Things I do to manage My MS
I have focused on reducing stress, with breathing techniques and walks. I have also learned to listen to my body and take breaks when I feel like I’m getting fatigue or any pain and simply doing things that give me pure joy.
Books: I have not read any MS related books just yet, but the Wahls Protocol by Dr. Terry Wahls and the Immune System Recovery Plan by Susan Blum are definitely on my book list.
I follow a few amazing fellow MS warriors on Instagram and recommend you check them out including our one and only @beatingmyms. @arose is one of my favorites, she is so sweet and her positive energy radiates to you. I invite you to connect with fellow warriors that make you feel positive energy, it really helps especially on bad days. My story is to be continued as this is just the beginning but I hope that it brings you a reminder that you are not alone and that there is a community of us that fully understand you.