Western Cape, South Africa
When were you diagnosed with MS? April 2022
What type of MS do you have? Relapsing-Remitting MS (RRMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
On my husband's birthday, February 5th, 2022, I first noticed that something was wrong. Initially, I thought I had a heat stroke because, it was insanely hot that day. Meanwhile, my balance was being affected by MS and I didn't even know it. Despite being misdiagnosed by multiple doctors, who initially suspected it could be an ear infection, stroke, or flu, I continued to listen to my body and advocated for myself until the root cause was finally uncovered two months later.
Now, Let's take a moment to reflect back to 2020, the hard lockdown had just started. One afternoon after taking a nap, I woke and noticed a dark spot in the middle of my sight in my left eye. The spot continued to worsen, eventually resulting in complete blindness in that eye. I immediately sought medical attention; but, what I didn't realize at the time was that this was my first major warning sign of MS.
I remember the doctor saying "Don't google optic neuritis, because all you will read is "MS this and/or MS that". So I listened and didn't read up about it. He put eye drops in my left eye which made the pupil HUGE (refer to the pic) for the tests. My sight slowly returned after 3 weeks of very high doses of cortisone. So I carried on with my life. As a result though, I was super fat from the cortisone, I had to get glasses and my eyesight was weakened in my left eye.
My life was a whirlwind after that. It included multiple trips to the doctor for testing and such. In February 2022, I visited the doctor for balance and dizziness issues and was prescribed vertigo medication and cortisone. During my birthday month in March 2022, I remember getting my hair done and purchasing a new car. This should have been a happy and exciting time for me. However, I was overcome with worry and fear. Because, I received feedback from the doctor that I was simply not satisfied with and I knew I had to pursue this further. On March 10th, I went to an ENT specialist. He ran a few tests and said that he didn't see anything wrong, but recommended I that see a specialist physician ASAP. I was feeling super lousy by now and I could hardly walk straight or stand still without wanting to fall over. My speech was terrible too.
After visiting several physician offices, I was very concerned. Because,
no one helped me or even considered helping me. Needless to say, I was broken and exhausted. As I was headed home, my phone rang. One of the specialists phoned me back and as his receptionist explained my symptoms to him, he became really concerned! I was so grateful SOMEONE listened and took me seriously!! I was admitted to the hospital that afternoon. Later that night, the doctor came in to see me around 11p and took note of my speech and balance issues etc. He tested me for high blood pressure, and cholesterol, among other things. The doctor suspected a stroke and recommended an MRI scan, EKG, and Doppler test. But, unfortunately, due to my financial situation, I told him that I really could not afford the tests right then. Silly me, I told him that I would see if I can get the tests done cheaper elsewhere. What was I thinking? Because scans and tests are so ridiculously expensive.
Needless to say, I left the hospital on March 11th still feeling horrible. The following week, I went to see my family doctor for advice about the expensive scans. He referred me to go for a CT scan which was much cheaper. Long story short, they saw 3 images ( I don't know what ) and suspected that I had 3 small strokes. I was devastated. I did not know how this could happen to me. So off I went back home with a new diet to follow, meds, instructions to change some habits, and a new mindset!
On April Fools' Day (go figure), I went to see the doctor again for weakness on my right side and slurred speech, which was suspected to be a fourth mini-stroke. So my husband rushed me to the emergency room. I was so scared. It was the middle of COVID, so he couldn't go in with me and went home. I was alone, scared, worried, cold, and nauseated.
They ordered another CT scan, but no changes were seen. The doctor recommended another MRI. I agreed to it despite the cost. It boiled down to MONEY or HEALTH. So of course, I chose HEALTH. Once the results came, the doctor told me that he will be calling a neurologist to come in and talk to me...Red flag!! The neurologist showed up around 8p and confirmed that all the symptoms pointed to MS. The MRI results showed multiple lesions on my brain scans. He did a lumbar punch in the room that night; because, I wanted to go home the next morning. I was done with everything at this point. They could do just what they wanted at this stage. I just wanted to go home.
I went for a follow appointment with the Neurologist and he confirmed that I had Relapsing-Remitting Multiple Sclerosis. He recommended that I should start with an Ocrevus infusion every 6 months. My life has changed so much. Plans don't mean anything anymore. I don't make plans. I don't have goals. I just live day by day. I have my days where I have panic attacks just thinking about it. But overall most days I'm fine.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I am currently blessed to have very few MS symptoms! Fatigue is definitely the biggest one for me. I have to concentrate a little harder when walking. Especially when going up or down stairs. I also sleep when my body needs it.
#3: Who/What has been your most important support system?
My family has been an amazing source of support for me, I couldn't ask for anything better. I live in a very small, seaside village where a lot of the people who live here have become like family over the years. Especially since my diagnosis. Everyone has shown me so much love and support through it all from fundraising for my treatments, to bunches of flowers randomly delivered for no specific reason. Before I made my diagnosis public, I felt so alone and depressed. Ever since joining various MS support groups and being able to share my experiences publicly, it has helped me so much.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
Fortunately, at this time I do not need or use any accessories.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I pray. I talk to God every day and I always look to him on my happiest and darkest days. I made friends with fellow MS warriors who have been fighting the fight for a long time. They keep me positive and motivated. I keep busy by working or watching TV/movie series. It's the quiet times when I start feeling anxious and scared. I should do better when it comes to self-care. I'm working on it. I have also learned to say no. Now more than ever. I guess MS has made me feel like I have a stronger excuse to say no...lol. I avoid situations that may cause me to feel uncomfortable or that are mentally and physically draining.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
Talk!!! If I knew then what I know now, I would have spoken up sooner! Words of encouragement, love, and support have made a world of difference. I initially felt like I was the only one with this illness; but as soon as, I spoke up and told my story, so many amazing things have happened! So many people with MS have reached out to me. A little girl in our village even wrote an essay about me! I have been in the local newspaper. There was a fundraiser charity walk that the locals arranged for me. My whole world has changed. We don't have to go through this alone.
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
I have started a Facebook and Instagram page dedicated to my story " Carla Living With MS". This is where I share my story, the challenges I have had up until now, and my treatments going forward. I started " Carla Living with MS" because I struggled initially to find fellow MS'ers who I could talk to or get advice from. I wanted to put myself out there to spread awareness and be there for people who may feel like I felt.
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