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.
God be with you.
❤️
I want to commend you on the detailed well written blog post that you shared here. You did not leave a stone unturned. I know that what’s happening to you is a tough pill to swallow but believe, that if God put you to it, He will see you through it! You have my utmost cooperation for anything you need me to do throughout these difficult times. I will be by your side every step of the way. Know that I love you to pieces and there is nothing, too big or too small, that I will not do for you. I am in awe, with the way you stepped up to the plate and handled efficiently, what’s been told to you about MS and how you researched everything to educate yourself to have a better handle on it. We will get through this together with your sister. Prayers will be said for you on a daily basis by your friends and family as well. Stay focused and positive but above all, manifest your healing to Father and He WILL heal you!
I want to take this opportunity, to thank each and everyone of you, for your prayers, your thoughtful and compassionate words that were shared on Naty’s blog. God bless you all and those who are struggling, but remember that there is a LIGHT at the end of the tunnel. God can do ALL things!!!
LOVE YOU!! Could not get through any of this without you. Thank you for always being here for me and supporting me through all the good and bad times. We are in it together. ❤️
Hey Naty, thank you for sharing this journey. I know it’s not an easy thing, but we’re here for you to talk to, share your amazing content, and pray for better health for you. You’ve always been a light to others, so it’s our turn to do the same for you. Hugs
Thank you for sharing your story! Praying for your health and strength.
I have no doubt that your story is going to inspire others to advocate for their health until they get answers. Lo
This means so much to me, thank you! xo
I appreciate this more than you know, thank you! It feels good to know I have all of this support around me. xo
Hi! I went to BHS also I think maybe I graduated a year before you. Just happened to see your post and followed the link to read your journey. Firstly, praying for you! This can’t be easy. Though I don’t have MS, I have gone through something very similar as you so I know exactly what you’re feeling. Towards the end of 2020 I started feeling off. I started the journey in October 2020 – doctor visit after doctor visit all results came back normal. Blood work was great. I kept getting dismissed time and time again. Finally in May 2021 I felt the lump on my neck. Swollen lymph nodes. “Probably Covid” – I knew this wasn’t the case. After a few months of the nodes not shrinking I had them taken out to confirm what I kind of already knew – the big C. Hodgkins Lymphoma. Thank God today I am 2.5 years in remission after the 6 months of chemo. I could write a book about the emotions, experiences, and all the wonderful “advice” along the way.
If you ever need to bounce some emotions off of someone who’s been to war feel free to reach me. I’m a member of a few groups where newly diagnosed people reach out just to chat about what to expect. Though I can’t relate to your diagnosis, the emotions probably overlap.
On the day I was diagnosed I stood up to pray (for the first time in a very very long time – which is embarrassing because I considered myself a devout Christian) and asked God why me. Through the journey, my relationship with God grew much much much stronger. On the final day of chemo I stood up again to pray but this time I thanked God for picking me to get cancer.
I wish you all the best and will raise your name in prayer daily.
Hey there,
As a former RP student I have followed your IG for years! You are so talented!! As a nurse practitioner that works in Neuro, I want to stress how TRUE the statement is “My MS is not your MS” you will find certain things that work for you and certain things that do not! It really is about finding some peace in the journey not the destination . A combo of eastern medicine and holistic really is what works best!! Please please please check out Dr Terry Wahls. She is a physician that has MS herself and she is doing life changing work. Please if you need anything at all reach out !!! Sending you strength and peace !!
Thanks so much, Nicole! It means a lot. xo
BHS! I feel like I have lived 100 lives since then. Thank you so much for sharing this with me. I am so sorry to hear about your diagnosis but I am happy you were able to get answers and that you are in remission! Sending so much love and prayers your way. I love your outlook and the way you allowed it all to shift your perspective. Very inspiring! Thank you for this message. xo
I’ve been following your content for years now and am so saddened to see this. I’m also angry on your behalf. I’m angry that life continues to deal you a shitty hand and you’ve been so outwardly positive while sharing the vulnerable parts. I’m angry that this derails a large part of your life and angry that you have to find new ways to deal with life. It feels unfair. Please know your followers are in your corner. Being diagnosed is step 1. Step 2 comes next. Living.
This made me teary eyed. I am so angry too. I am going to use that anger to give me the motivation I need to keep pushing through. Life can be so unfair sometimes. But I will not let this keep me down. Thank you for this. xo
That was very brave of you to share your story and we’re all with you! Keep the positivity going and stay strong Naty! ❤️
I can feel all the love and support, thank you so much! xo
Hello Naty, I been following you on instagram since for ever (probably 2013) thank you for sharing your story! Sending hugs and prayers your way🫶🏻 please don’t stop sharing your story, “KEEP SHINING, YOU’RE SOMEONE’S WAY OUT OF DARKNESS!”
I am so happy you’re here. Thank you for reading and for this sweet message. xo
I have been following you for a few years now. You are so brave for sharing this difficult journey. You will be in my prayers. You got this ! ❤️
I appreciate this so much, thank you! xo
Thank you for sharing. You continue to inspire us through it all! Love you!
Thank you, love you!
Following u for years!! I felt so many emotions reading your blog. The uncertainty, the anguish, frustration, anger…. & yet so inspired by your resilience and positivity. I know all days wont be easy but know that we are rooting for u and we will all fill your cup when it spills a little..dont ever doubt of the support u have. Let the angels watching u from above ( dad and grandpa) watch u from above& push u through! Sending u prayers, positive enery n vibes. ❣️
Thank you for this beautiful message! It truly means so much. Thank you for fulling my cup! xo
Thank you for sharing. I like reading other’s experiences when they first got diagnosed. I was diagnosed in 2018 while in the military. One day I was watching TV and all of a sudden my cognitive abilities were wat off. I had slurred speech and difficulty writing. It was the strangest thing I ever went through, in my mind I knew what I wanted to say but by body was not cooperating, I was 35 at the time and thought I was going through a stroke. At the er I went through a battery of test, ct which ruled out stroke, but also showed lesions in my brain. After the Brain MRI, I had a team of Neurologist (Fellowship and Neurologist) in my room examining. Was told it was good training because of the rarity of the disease and was asked multiple sometimes silly questions. I’m currently on Ocrevus as well and my exacerbations has slowed but I was currently upgrading from RRMS to SPMS, in which I’m totally fine with. I came to terms a long time ago with my MS and consider it a part of me now, not who I am, but plays a role in how I am. I was forced to medically retire from the military because MS makes you non deployable, which was a blessing in disguise, because now I’m fully retired at 40 and do not need to work and has helped me become more focused in my faith and strengthen a much needed bond with God all mighty and my saviors Jesus. God bless and thank you again.
You don’t know me and I don’t know you, but I found your story on Instagram.
I was diagnosed with MS 2 years ago, and like you I can date symptoms back to at least 2017, but I ignored them.
My symptoms are very similar to yours so I can really relate to your experience.
I wish you all the best on this journey. You will adapt and grow so much from this, but it’s also ok to give it the finger every so often because it can really suck!!
Hi Connie, thank you for your message. I am so sorry that you have to live with this too. It really does suck! I appreciate you reading my post and thank you for the well wishes. Sending all the good energy your way! We got this.