My Diagnosis Story

It’s been a while since I posted anything new on my social media or an article on my blog, and I figured it’s time to update all of you, my wonderful readers and friends, on the path I have been walking for the last month and a half. 

How It Started

On the last Saturday in October, Matt and I went to the North Carolina State Fair, something I have wanted to do since we moved to Charlotte. The day was wonderful, with lots of fun fair food and good conversation. Towards the end of the day, Matt and I went on the Ferris Wheel. As we got off of the ride and started walking away, my foot suddenly fell asleep. It wasn’t that it had fallen asleep on the ride. No, we were already walking away, and it was fine one step, and then the next step it was asleep. 

I mentioned it to Matt instantly, and we chalked it up to the idea that maybe I had tweaked something in my back, and it would probably go away after a good night’s sleep. Instead, when I woke up the next morning, my other foot was also asleep. It wasn’t a feeling that ebbed and flowed, instead it was a constant sensation of pins and needles that just…. Never went away. 

It was strange, but not frightening, and we figured that if it lasted for another few weeks, I would ask my PCP about it when I was in Michigan for Thanksgiving. We told ourselves that maybe I just had bad circulation or had pinched a nerve in my back. It was nothing to worry about. 

Except I did worry, and I kept worrying for about a week. Everyone in my life was telling me that it was no big deal, but I had convinced myself I had a brain tumor or diabetes or MS. 

Almost a week later, I was in the shower shaving my legs and realized that the sensation of the razor running over my shins felt all wrong…. I got out of the shower and called my mom to tell her that the feeling was progressing, moving from my feet into my shins and calves. My mom told me that because the sensation was moving, it was time to go to the emergency room. 

Matt and I packed a bag of snacks and activities (emergency room visits are notorious for taking hours), and went to the local hospital. We arrived at 7 pm and didn’t leave until almost 2:00 in the morning, but by the end, our fears were alleviated. 

The doctor had checked my circulation to rule out blood clots; she was confident that the symptoms would be worse if it was a tumor; my blood sugar came back as regular so diabetes was out of the question; and I had no family history of MS. All of my big fears were gone! She told me to see a PCP whenever I could, but I shouldn’t feel like I needed to rush…. 

A Journey to a Diagnosis

While I felt my anxiety lessen that evening with all of the good news, the next day, I was panicking again. My feet and legs were getting worse by the day. They felt like I was walking on blocks of cement. I was sobbing all weekend, so worried about what was wrong and terrified that I was going to be stuck this way forever. 

I tried as hard as I could to ignore my brain that weekend, but on Monday morning I was up at 6:45 am, ready to dial PCPs as soon as they opened at 7:00. 

I finally found someone that was available to take me that afternoon, and I also scheduled a physical therapy appointment for the following day (Tuesday) to rule out a pinched nerve.

When I saw the PCP, he told me that he agreed with the ER doctor that it wasn’t a blood clot, diabetes, or a tumor, but he was putting MS back on the table. Before we got to that, however, he first wanted to test my blood for vitamin deficiencies. If my blood came back fine, he would know that it wasn’t a vitamin deficiency, in which case he would refer me to a neurologist. 

On Tuesday, I visited the physical therapist and cried on her table about how scared I was. She gave me every test in the book to try to prove it was a pinched nerve or a slipped disc, but to no avail. By the end of the appointment, she told me I should cross that off of my list of theories.

As I got back in my car in the parking lot, I got an email with my blood results…. No vitamin deficiencies…. Gulp. 

The results also came alongside a referral to a neurologist and a steroid prescription to take while I wait, as neurologists are notoriously difficult to get an appointment with and my PCP wanted me to have relief while I waited. 

I called the neurologist right away, and the soonest they could get me in was the third week of November. I took it, but definitely was not happy that it would take me that long to get answers. In the meantime, I filled my prescription at the pharmacy, and even though I wanted to start taking it instantly, the pharmacist encouraged me to wait until the next morning so that the steroids didn’t affect my sleep….. And thank goodness for that, because this whole story could have gone a lot differently had I not been discouraged. 

The neurologist’s office closed at 5:00 pm, and for some reason I had an inkling to call them back around 4:45 pm and ask if they had any appointments open up sooner…. I don’t know what made me do that, but again…. Thank goodness I did. They had an appointment the next day at 9:00 am!!! How lucky was I! 

The next day, Matt and I woke up and went to the neurologist, where she performed a bunch of physical tests on me to try and narrow down a diagnosis. I passed most of them, but when she got to testing the reflexes in my legs, I had a very strong reaction. She asked if I had ever been told I had strong reflexes, which I proudly said I hadn’t, thinking I was acing this test. Strong reflexes mean I’m doing great, right? Wrong…. They are a sign of a neurological disorder…. I also was not able to sense vibrations in my feet, and my temperature receptors were wildly inaccurate as well. 

After my tests, the doctor sat me down to talk through her theories, the most notable of which was Multiple Sclerosis. 

As soon as she said the words “Multiple Sclerosis” I burst into tears. The only experience I had with someone with MS was watching reality TV a few months ago, and seeing a man in his 60s that couldn’t walk or talk. I was so scared, but the doctor tried her hardest to reassure me that if that was my diagnosis, there were treatments that would allow me to be okay. She even told me that if I was diagnosed with MS, she was confident that I would be able to run a marathon in 50 years! I clung to that sentence life a life raft as I waited for a diagnosis. 

She ordered 3 MRIs and was fairly certain she would find lesions on them, but also ordered 9 different blood tests to rule out other neurological disorders, including Lyme disease, HIV, and some Asian viruses I could have contracted on our honeymoon to Bali last year. She told me not to take the steroids my PCP had prescribed because it could hide my symptoms and make it harder for me to get a diagnosis. Thank goodness the pharmacy had talked me out of taking them when I picked them up! 

Waiting

I got my MRI that Friday, but when the results came in, my doctor was out of town, so I had to wait about 10 days to get a final diagnosis. 

This period of time was BRUTAL. I was sobbing every day, worried that it was going to be MS, but also worried that it wouldn’t be and they would find something even worse on my scans, like a brain tumor.

My legs were getting worse by the day. On Friday the feeling had moved up into my thighs, and I was having a hard time walking. Matt and I tried to walk to the mailbox that weekend, and it took us ages, with me needing to stop for breaks because my legs and feet were not working properly. I was trying to keep my wits about me until I knew for sure what I was facing, but I was an absolute wreck.

We went to Savannah Georgia the next weekend to pass the time, but our walking tours (my favorite thing to do when traveling!!) were keeping my symptoms top of mind. Everything made it worse… socks, showering, sleeping, anyone touching me. I was miserable, and I could only think about two things: 1. How terrible my symptoms felt and 2. My fear of getting a diagnosis and hearing I would be stuck like this forever. 

Diagnosis 

After 10 days of torture, we had a follow up appointment scheduled with my neurologist on Wednesday, November 20 to go over my results. My mom flew in the day before the appointment so that she could attend, and while I was happy to have her there, it made the whole thing feel SO real. 

My appointment was at 4 pm, so making it through the day was tough. I had a client I needed to deliver a recipe and photos to, and while the process would normally take me a few hours, my legs were debilitating me so much that I had been working on the photoshoot for four days. I spent the day finishing up my final shots to distract myself. 

When we arrived at the doctor’s appointment, my neurologist pulled up my scans to show me what she had found. The MRIs showed that my symptoms were being caused by an active lesion on my spinal cord. I also had an active lesion on my brain, which was asymptomatic, and four more old lesions in my brain that had popped up at some point in my life, though they were also asymptomatic. 

All of this confirmed what the doctor had already suspected: At the young age of 28 years old, I was diagnosed with Relapsing Remitting Multiple Sclerosis. 

Time felt like it stood still. I thought I would cry, but I actually didn’t. The doctor explained what MS is. As I understand it (I am trying so hard not to Google right now), the B Cells in your immune system attack your central nervous system and cause scar tissue on your spinal cord and brain. That scar tissue is called a lesion and can cause permanent nerve damage. 

We went through treatment options, the most notable of which was B-Cell therapy, which would kill the cells attacking my central nervous system to try to keep new lesions from forming. The first piece of information that actually got through to me was that this treatment would leave me immunocompromised, and I would no longer be able to get live vaccines like Shingles or Yellow Fever. 

As silly as it sounds, that was the first thing I grieved. I think my brain was too overwhelmed to process the entirety of the diagnosis, but when it heard the vaccine news, it was something small to focus on and mourn first…. I started asking all kinds of questions about how I would get to go on a safari in Africa one day if I couldn’t get a Yellow Fever vaccine haha. 

My doctor gave me some pamphlets on the treatment she was recommending and some magazines about living with MS and sent me home to decide on how I wanted to proceed. 

The Aftermath

We left the doctor’s appointment and I just cried and cried and cried for the rest of the night. 

I read the magazines thinking they would make me feel better, but instead I learned stories like: 

1. “I used to be a very active hiker and now I go on short walks with a cane”
2. “Sometimes I lose my ability to understand speech and my husband has to reorient me in the middle of a sentence”
3. “My children have taken on a caretaking role” 

The next morning began a few days of the kind of depression that you see in the movies but unless you’ve lived it, it doesn’t seem real. I would sit at the kitchen table and just stare at the wall for an hour, not able to get myself to move.

I was picturing myself losing my ability to walk and not being able to see all of the corners of the world I want to see. 

I was envisioning not being able to do my job anymore because I couldn’t stand to photograph or get words out to talk to you all on Instagram. 

I was mourning my dreams of being a mom, because I didn’t want to be a burden on my children. 

I was picturing losing my cognitive function and just descending into a blob of a person, unable to do or be the things that made me… ME.

It was terrible, and all of this was compounded with the fact that my legs were still getting worse. Every step I took was a reminder that my ability to walk could be stripped from me at any moment and that the life I loved was being pulled from me. 

My mom, Matt, and I went to go see Wicked which we thought was a good idea, but then Nessarose was in a wheelchair which made me cry in the theatre. AND THEN the animals started losing their ability to talk, which prompted me to leave the movie and go cry in the bathroom for 30 minutes haha. 

I couldn’t align the stories I read with the promise from my doctor that I would be okay. I had a follow up appointment with her on Friday to go over some additional questions and told her how much I was struggling with believing her reassurances. 

She told me that she has given this medicine to a thousand people and only seen new lesions in 3 of them. The numbers she gave didn’t match the efficacy rate on the pamphlets she had given me, but she walked me through the difference and tried to make me feel comfortable with my prognosis. Her most notable quote was “Listen, the point is: you take the medicine, and you get no more problems” hahahaha. She couldn’t make it much clearer than that. 

I opted to move forward with a B Cell Therapy infusion called Ocrevus, which my doctor requested from my health insurance. She did caution me that it was possible for them to deny the treatment, in which case we would have to try a different medicine. And now began a long game of praying my treatment was approved. 

Second Opinion

While I did believe I had MS, I also wanted a second opinion from another doctor just to make sure that the medicine I had requested really was the best option for me. 

On Friday, my mom called around and somehow got me an appointment for the following Tuesday (the Tuesday of Thanksgiving) with the director of MS Research and Care at the Cleveland Clinic, one of the top MS hospitals in the country! We were ECSTATIC!!! 

On Monday, Matt and I drove from North Carolina to Ohio for my appointment with the doctor. My mom, dad, and aunt drove down from Michigan to meet us there… I think we had the most packed MS appointment this doctor had ever seen! 

I PANICKED before the appointment, because the hospital tested my cognitive function by making me do tests that were so easy I couldn’t fathom not being able to do them. I was so worried about why they were making me do these tests… is that what my future was going to be? Not being able to match numbers to one another or put a pin in a hole? The fellow that did my intake also tested my cognitive ability by showing me his rubber glove and asking if I knew what it was…. 

“A GLOVE?! Yes, that’s a glove and you are freaking me out!!”. Geeze louise, I was spiraling…. Is this disease going to take my brain from me so much in the future that I won’t even be able to recognize a rubber glove? 

But then the doctor came in, and the news was as good as it could be: He agreed with my diagnosis and the treatment that my North Carolina neurologist had laid out. We had caught it early and he said he would be very surprised if he saw new lesions after I started medicine. 

He also gave a 3 day steroid treatment to help my legs, something that my neurologist in North Carolina had refused to do. They were 50 mg pills and he prescribed me 25 PILLS A DAY for 3 days (the steroids my PCP had prescribed me that I had never taken were 5 mg pills and it was 5 a day haha). 

He said he wasn’t sure if my symptoms were too far gone already, but if the steroids were going to help, I would see improvement in the next week. I left the appointment and took my steroids instantly, and Matt and I started our drive to Michigan for the Thanksgiving holiday. Before we even reached home, I could already feel improvement happening in my legs. I could have cried from relief.  

Over the Thanksgiving holiday, my legs got better and better every single day. The numbness, pins, and needles had subsided almost entirely, but that symptom was replaced by a new symptom: the entire lower half of my body started constantly vibrating all the time. It was like the inside of my legs were buzzing constantly! It was/is SO annoying (it’s still happening as I write this), but it is not debilitating like my prior symptoms were, so I will take it. 

I was so grateful for the steroids and that I had opted to see a second doctor! I had to keep my doctor in NC because I would be getting treatment there, but I now had the Cleveland Clinic on my team as well, and both of them had agreed: I would not live a sad, sad life. 

As long as I got the good medicine to keep future lesions away….  I still hadn’t heard from my health insurance and I was so nervous that they wouldn’t approve my treatment. 

And That Brings Me to Today

We came home from Thanksgiving on Sunday, and it is now Thursday, December 5 as I write this. While my legs are not back to normal, they are LEAGUES better than they were even a week ago. At this point, compression socks and a daily medication has made my symptoms bearable, and while it would be annoying if they continue to vibrate for the rest of my life, I will be able to deal with it. 

Nobody knows if my body will be able to heal itself all the way, but wherever my symptoms land after 2 years is where they will stay forever. Here’s hoping the vibrating sensation goes away. Two weeks ago I would have never believed that my legs would be feeling so much better, and when I say that I take not one SINGLE step for granted, I mean it.

I also got GREAT news yesterday which is that my infusion treatment was finally approved by insurance! I start my treatments on Monday, December 16 (update from the future: this got delayed and I started treatment on Monday, December 30). It will take a few months for the medicine to kick in all the way, and until it does, it’s possible for me to get more lesions. But I am hoping that they stay far far away from me. 

Mental Health

My mental health is rocky right now. Some days I feel great and positive about my prognosis, and other days I am SO unbelievably anxious. I have developed some pretty intense medical anxiety, which has kept me awake more nights than I can count. 

I am very in tune with how things feel in my body, and anything feeling even slightly off (ex: having cold feet or waking up with pins and needles in my hands) sends me into a spiral. Today I have convinced myself that my pinky is tingling and that I have a new lesion, even though when I really focus on it, I realize that the sensation isn’t even there and it’s all in my head.  

Matt has been great about giving me reassuring pep talks about 100 times a day, making sure I know that I am loved and safe and repeating what the doctors have said a million times: I’m going to be okay. 

Starting Treatment

I was able to start treatment on Monday, December 30 for my first round of medication. The treatment lasted around 5 hours, and Matt sat with me and held my hand the whole time. This was my first time with an IV and I quickly learned how much I hate them!! But the IV is saving my quality of life, so I will be forever grateful for it.

My first dose of medicine is split in half, so I will get my second dose in a few weeks. After that, I only need to come in for treatment every 6 months, hurray!

Aside from a headache on the day of the infusion, I am feeling great and have had no other side effects, though I am washing my hands a lot more to make up for my new immunocompromised status.

I felt instantly better once I had that medicine coursing through my veins knowing that I was doing everything I could to protect myself from this disease. And I can’t wait to get the second half of my first dose (and wait for everything to kick in around April) so that I can rest a whole lot easier.

Finding the Positivity 

After my bout of depression, it was time for me to stop crying and start figuring out how I was going to live with this disease. I started keeping a journal of every single positive story that I heard about someone with MS, which has been helpful for me to look back on when I start to panic again. Every time I hear about someone that has MS but can still walk and talk, they go in the journal.

If any of you reading this have stories for me to add, send them my way! 

It was also helpful for me to remember that I somehow went from ER to diagnosis in just TWO weeks! And a second opinion less than a week after that! Normally that would take anywhere from 2-4 months in our healthcare system, but God gave me a break and got me answers quickly, and for that I am grateful. 

Other things I am grateful for: 

1. MODERN. MEDICINE. The treatment I am taking came out in 2017, and before that, having MS was a lot more of a wild card. I am so grateful to be born in a time when medicine can help me.
2. My husband has been the best partner and support system and never makes me feel like I am annoying him when I make him give me the same pep talk multiple times a day. 
3. My parents and aunt for traveling to my appointments and showing me how much I am loved.
4. Friends and family that call and check in on me.
5. The fastest MS diagnosis known to man. 
6. We have great health insurance and a stocked HSA, so this journey hasn’t impacted us as much financially as it could for other people. 
7. Our plans to start a family will not be impacted by the diagnosis or the treatment. 
8. All of the people that raised money for MS research and treatment and helped bring my treatment into existence. 
9. Connections I have already found in the MS community that have helped connect me with doctors, reassure me, and offer support. 
10. I’ll say it again… Modern medicine <3 

If you or anyone you know has Multiple Sclerosis and are doing well, please feel free to send me a message telling me your story! I would love to hear all of the positivity I can get right now.

I want to thank each and every one of you for caring so much about me, for checking in and for following along on my journey. It is also because of all of you readers that I was able to take time off for my health when I needed to and still have a job to come back to. You mean the world to me and I am forever grateful to have you in my life. 

XOXO 

Alexandria