My Diagnosis Story: I Have Multiple Sclerosis

This is a very difficult post for me to write. On September 4th, after almost 6 months, 4 doctors, and a ton of testing, I was diagnosed with Multiple Sclerosis (MS). It feels insanely strange to type that out as I’m still not sure I’ve come to terms with it quite yet. For context, MS is a chronic disease of the nervous system. The immune system attacks the protective sheath that covers nerve fibers and causes communication problems between your brain and the rest of your body. 

Before sharing my story of everything that led up to this diagnosis, I want to acknowledge that for some people it can take double the amount of time or even longer to find out what’s wrong. And in some situations, people might not ever get a clear answer. All of this has taught me the importance of advocating for myself. We know our bodies. We know when something is not right. If the first doctor you see does not take you seriously or if they aren’t able to get to the root cause, don’t hesitate to go to someone else. My heart goes out to anyone who is currently fighting a health battle. It is not easy. I see you and I hope you remember you are not alone.

First, Let’s Go Back To Where It All Started

While my symptoms this year seemingly came out of nowhere, this didn’t suddenly happen. It’s been brewing in my body for a very long time. My earliest known symptoms actually date back to February 2017, I just didn’t know what was going on. It started with a numbing/tingling sensation in my legs that persisted for several weeks. I lived at my mom’s house at the time and remember walking to CVS on a snow day and my legs got so bad that I had to take an Uber back home. I found old text messages I sent to a friend that day who’s sister has had MS for years. I asked her about the symptoms and if she thought they could possibly be related. This has strangely been a fear of mine for years. I ended up going to the doctor and all of my bloodwork came back normal, except for low vitamin D & elevated B12 levels due to a supplement I had been taking. The doctor recommended I see a neurologist, and because the symptoms eventually went away on their own I never did. 

Then in October 2018 and April 2019, I experienced blurry vision that persisted for several weeks. Some of you might remember me sharing this on Instagram, as it happened when I lived in NY. I went to an eye doctor both times and they said it was probably due to dry eyes and gave me drops. The blurriness eventually went away. 

In August 2019, I experienced persistent tingling in my legs and my right hand. I also started having some urinary hesitancy issues. I found old text messages (I have them all saved indefinitely) where I was sharing these symptoms with friends. One of them had recommended I see a neurologist if my PCP didn’t find anything wrong. I went for bloodwork and once again, I had a vitamin D deficiency. I never went to a neurologist and I wish I had.

Some of you might remember when I was actively running between 2020-2023. Around that time I started experiencing a lot of stiffness in my legs, especially when waking up in the morning. It would be so difficult for me to fully stand up out of bed because my legs felt so tight and stiff. I always thought it was due to not stretching enough, but now I am learning about MS spasticity.

During my race last April, I knew that something felt off. For the first time, I kept tripping over my feet while running. That had never happened before. I almost fell several times and once I was feet away from the finish line, I collapsed. There’s been other symptoms over the years that weren’t as prominent — fatigue, lack of energy, urinary frequency & urgency — but looking back now and after talking with my doctors it makes sense in how it’s all been connected. This feels like the last missing piece of the puzzle and now I can see the full picture. 

April & May — PCP 

My recent symptoms this year initially started on April 8th. A friend of mine came to meet me in Hoboken for a morning walk by the water. It started out subtly, with some slight weakness in my legs. I remember needing to sit down a few times on our walk and she mentioned she noticed my gait was a little off. Then in mid-April, around the time of Kiko’s birthday, the symptoms started up again. I remember walking him one day and I felt weird. My legs seemed to be slightly heavy and wobbly. I also had a headache that persisted for a few days. I thought maybe my body was just tired. But then a week later on April 23rd, I was walking to and from the laundromat with my laundry bag and I knew something was terribly wrong. It was almost as if I couldn’t get one leg in front of the other. My legs continued to feel weak and heavy. I had to stop several times on the way home because I thought I was going to collapse. When I finally made it to my building and up the stairs, my legs almost buckled underneath me at the door and I needed to sit down immediately.

I called my PCP and was able to schedule an appointment a few days later. When I got there, the appointment went by extremely quick and I felt a bit dismissed. I explained what had been happening and she automatically assumed it was from a vitamin D deficiency, as this can cause some wonky things to happen in the body.

We did a round of bloodwork and I got an X-Ray on my right hip to rule out any injuries from my fall during last year’s race. The doctor was right in the sense that I had an extreme vitamin D deficiency. I was a 12, the lowest I’ve ever been. She prescribed me a 50,000 unit pill to take once a week for 12 weeks and that was that.

After weeks of taking the pill and not getting any better, I called the office to follow up with the doctor and see if we could do more tests. I never got a call back. During this time, I was able to walk better than I am now, but it was still a struggle. I wasn’t limping, but my gait was off. It sometimes felt like I couldn’t walk a straight line and I would trip over my feet. I had a couple of days where I actually felt a tiny bit better and I pushed myself to walk a little more. There was a week where I made it all the way uptown to my sister’s apartment as well as to Trader Joe’s. And I remember thinking ok, maybe it is the vitamin D? Maybe this is working, but it’s taking time.

June & July  — Rheumatologist

I was wrong. Things started to get worse. After several conversations, I decided to make an appointment with a Rheumatologist to rule out any autoimmune diseases, like Rheumatoid Arthritis. I have to quickly note that scheduling some of these appointments is what dragged everything on more. I had to make them almost a month in advance. It wasn’t until June 24th that I finally got an appointment — two months after my PCP visit. 

This doctor made me feel heard and took me seriously. We discussed my symptoms for a while as well as the possibility of what it could be. We did extensive bloodwork and she tested me for inflammation, autoimmune diseases and muscle damage. Everything came back normal. She believed that because of the way I was experiencing my symptoms, it was most likely lower spine related, possibly neurogenic claudication. But she couldn’t say that with certainty and acknowledged this could also be neurological. She then got me set me up with a lumbar spine X-ray and a lumbar spine MRI.

The X-ray showed disc space narrowing in my L5-S1, which could indicate spinal stenosis. The MRI showed that I have Grade 1 Retrolisthesis, Spondylolysis, and a bulging disc but no significant stenosis. When I got the results back I remember thinking Ok, this has to be it. It’s my back. But when the doctor called me to discuss the results, she said these issues are very common and most people don’t ever experience symptoms. The MRI was not showing how my nerves were being affected and she recommended that I see a neurologist for further testing. She asked me to keep her in the loop and check in with her after my appointment, which I really appreciated.

During this time, my symptoms were getting worse. It got more difficult to walk and I couldn’t stand up for long periods of time without feeling like I had to sit down. I went from walking 10K+ steps per day to barely hitting 2K on most days. I went from running and taking Rumble classes to not being able to walk two blocks. I had to spend a lot of days in my apartment this summer without going outside so that I could rest my legs. Whenever Kiko came to stay with me, I had to cut our walks so short. Some days, I could barely make it around the corner. I have now learned how much the heat can affect my MS.

Other symptoms that came up were a numbing/tingling in my legs and feet (mostly my right foot) and an icy/hot sensation. I also started to get lower back pain, a loss of appetite and extreme fatigue. I have always struggled with being tired, but this was on a whole new level. I slept for 12 hours one night. In terms of my upper body, everything appeared to be normal. My speech and vision were ok (thank God) and I didn’t have any difficulty swallowing. At this point, I still thought it could possibly be related to my back issues, but the fear of it being neurological got louder.

 

August — Neurologist

I didn’t know how difficult it would be to get a neurologist appointment. Initially, I had one scheduled for September but I did not want to wait that long. I was able to find another doctor and got an appointment scheduled for August 1st. After looking at all of my test results, asking a bunch of questions, watching me walk, etc. the doctor agreed with the Rheumatologist that while my back issues could potentially be causing my symptoms, it was most likely from something else.

He set me up with a brain MRI without contrast. When the MRI results came back, it showed that I had multiple spots in the white matter. This was an indication of demyelinating disease. To give a quick definition on this ” it refers to any disease affecting the nervous system where the myelin sheath surrounding neurons is damaged. This damage disrupts the transmission of signals through the affected nerves, resulting in a decrease in their conduction ability.”

This is when I first heard the words “It could be a sign of Multiple Sclerosis.” I knew this whole time that it could be a possibility based on what I was experiencing, but hearing the words come out of the doctor’s mouth made it more real. The next step was getting another set of MRIs. This time I needed a brain MRI with contrast, thoracic spine with and without, and cervical spine with and without. It felt like the longest hour and 20 minutes of my life. 

When I got the results back, the doctor called to let me know that I have one lesion in my cervical spine and one in my thoracic spine. They are both chronic, meaning that they are older lesions. He told me he read the results with the MS specialist and that the next step was to schedule an evaluation appointment with her for further testing. He also told me I would need to get an EMG test to see if there’s been any nerve damage or muscle damage from my back issues.

September — MS Specialist & Diagnosis

I got a doctor appointment scheduled for September 4th and an EMG test for September 6th. (EMG was normal) My appointment with the MS specialist lasted about 2 hours. The doctor went over my MRI imaging and confirmed that I have multiple lesions on my brain and spine. While the report noted only two lesions on my spine, she could see from the imaging that I actually have more than that. All of my lesions are old and inactive, which is why I didn’t need to go on steroids before treatment. The doctor is pretty sure this is Relapsing-Remitting MS, but she does have some concern that this might have already become Secondary Progressive MS. We will know more in time once I start treatment. It’s a scary thought that this might have already progressed, but all I can do is take this one day at a time and pray for the best. I am giving it all to God. 

She did a full evaluation for me, testing my cognitive and neurological function. We discussed mine and my family’s medical history. They also did another round of extensive bloodwork to rule out a few more conditions that are very similar to MS, like Lyme disease and a rare neurological condition called NMO. Everything came back normal. We discussed all of my older symptoms and I got confirmation that they’re connected. In fact, one of the lesions on my brain is near my optic nerves, which explains my blurry vision in 2018 & 2019. 

The doctor told me that my story is a MS story, and since all of my imaging and testings were conclusive, I did not need to get a spinal tap. I’ve seen so much discourse online around this and have read more about lumbar punctures than I’d like to admit, but it is not always necessary to confirm a MS diagnosis. I am very thankful for not needing it, especially since I have scoliosis. I have heard some horror stories.

Next Steps & Where I’m At Now

I started physical therapy on Monday and I’ll be going three times a week to start. My core and leg muscles have gotten very weak from being so inactive these last 6 months. The hope is this will help me to regain my strength and improve my mobility and spasticity. I will also be getting an infusion treatment every 6 months called Ocrevus. I tested positive for the JCV antibody and because of that I am not able to take certain medications, as it can cause a rare brain infection called PML. 

I am feeling such a mix of so many different emotions right now — anger, sadness, denial, fear, confusion, grief for my life before this and even relief in finally knowing. It is so easy to look back and wonder what would have happened if I went to a neurologist in 2017. But then that would also mean I might not have had all of the experiences and opportunities I had these last 7 years. I guess everything has unfolded the way it was supposed to. 

I don’t think it’s a coincidence that I ended up moving to Hoboken. I don’t think I could have gone through all of this while living in New York. Living closer to my family has definitely been such a blessing. My sister is literally 10 blocks away from me and it’s a much easier drive for my mom. I also don’t think it’s a coincidence that I left my last job in February. I would have never been able to do it with all of this going on. It’s wild how things happen. We don’t always understand the reasons when we’re in the thick of it, but later on it’s easier to see why.

Sharing health issues is not an easy thing. It comes with a lot of assumptions, opinions and unsolicited advice, which can be very confusing and overwhelming at times. While I appreciate it and know it comes from a good place, please know I am constantly researching, will be listening to my doctors and making any diet and lifestyle changes that I need to. All of this is new for me and I am learning more and more about this disease every day. I have also had conversations with people who have MS, which have all been so helpful. But someone told me “My MS is not your MS” and it really is so true. Everyone’s experience with MS is going to be different. With all this being said, I do thank everyone who has reached out, checked in and sent prayers over these last 6 months. It means a lot. More than you know. 

If you made it all the way to the end, thank you! I appreciate you taking the time to read all of this and I hope that maybe it could be helpful for someone struggling to get answers. Let this be a reminder to take care of your health and listen to your body, always. I’ll share more soon. Love you. P.S. 🖕🏼MS.