My personal journey with MS started in 2018, but MS has been a part of my life since I was in college when my mother was diagnosed. At that time, there weren’t as many medications offered, and it wasn’t as widely diagnosed as it is now. It took her many years, a handful of doctors and a few incorrect diagnoses before she found a neurologist that was familiar with MS, which is a similar story to mine (and as I’ve learned, many others).
For those of you unfamiliar with Multiple Sclerosis (MS), it’s an autoimmune disease that affects the brain and spinal cord. When you have MS, your immune systems attacks the protective covering (myelin) of your nerve fibers, and the nerves misfire due to miscommunication from your brain to the rest of your body. There are many different ways it presents itself from person to person, because it depends on where the MS attacks your nerve fibers. That’s also one of many reasons why it can be challenging to diagnose because it affects each person differently.
I started having strange symptoms around March of 2018, but at first I chalked it up to it being a trying time and related to stress. In the beginning it was mostly fatigue and weakness along with pins and needles that would happen in my hands and throughout different parts of my legs. I was getting dizzy spells that made it difficult to even get out of bed at times. At that time, the fatigue was the only constant — the other symptoms seemed to come and go. My mother convinced me to see my primary care doctor, and after many rounds of blood tests and an MRI of my brain, they found two lesions.
Lesions are the areas of your brain or spinal cord where the MS has attacked the nerve fibers. I was referred to a neurologist, who sent me for more tests including additional MRIs of my brain and neck, as well as a lumbar puncture. That was an experience because the table malfunctioned in the middle of the procedure and I was stuck in a very weird position in nothing but a hospital gown while the maintenance team worked on the table (and yes, while I was still on it!). At least I can laugh about it now. Regardless, the results of the lumbar puncture and all of the MRIs didn’t offer any additional clues as to what was wrong. I was told by the neurologist that I had clinically isolated syndrome (CIS), but that she wasn’t able to diagnose me with MS at that time. CIS just means that you’ve had your first neurological episode caused by inflammation and demyelination of your nerve tissue. She told me to follow up every 6 months to have MRIs done to track the progress of the lesions, but that unless my lesions changed in space or time (either additional lesions in another location or additional lesions over the course of time), she couldn’t diagnose or treat me for MS.
Following that experience, there were a couple of years that I didn't seem to get worse. I would experience the numbness and tingling sporadically, however the fatigue was an obstacle at times. It’s difficult to put into words the fatigue I was experiencing. As someone that has suffered from insomnia most of my life, I know what it feels like to be tired from lack of sleep. This is different. The best way for me to describe it is that I feel like I’m under water. Everything seems to move slow and it takes a lot of effort to participate in anything. Even conversation is difficult because it takes a lot of energy and focus to pay attention and participate. It got to a point where I was avoiding social gatherings. No amount of sleep made it better, and on many days I just wanted to spend the day in bed. Then the pain in my legs began. It was unbearable at times. It was mostly nerve pain down the sides of my legs, but constant and unforgiving. I began to get spasms in my legs and feet that would last for hours, sometimes a full day and night. My legs would get so stiff and tight that I had trouble walking at times. I started getting tingling in my face and strange sensations in my body. Sometimes it feels like a vibration — like my phone is vibrating in my pocket but my phone is nowhere near me. Other times it feels like an electric shock down my body, specifically my legs. I had since moved to Naples, Florida, and had to meet with a new neurologist, this time an MS specialist. He reviewed all of my medical records, and sent me for more blood tests, MRIs and of course, another lumbar puncture. This time, the MRIs showed additional lesions in my brain and proteins that indicated inflammation in my spinal fluid that are called Oligoclonal bands (or OG bands).
That was enough for me to be officially diagnosed with MS last December, and the neurologist started me on a disease-modifying therapy (DMT) called Vumerity. Any DMT is meant to slow the progression of the disease. It doesn’t address the symptoms that you have, but the goal is to slow down the progression of the lesions. Most DMTs are either an injection, oral therapy or an IV infusion. I took the Vumerity for three months, however, it made me incredibly ill. I spent almost three full months not able to leave my home because I was exhausted, unable to walk well, in pain constantly and sick from the medication. I was lucky that I worked a job that was fully remote, so virtually I looked fine even on days where I was having trouble controlling the movements of my body or felt violently ill. I finally came off the medication at the end of February.
March was a challenging month for me this year. My legs seemed to be getting worse. I wasn’t able to control their movement at times, I had constant nerve pain, they began to swell sporadically, and I would lose feeling in my legs and especially my feet often. I started experiencing strange sensations in my legs and arms — almost as if something was tightening around my leg or that a hair was lightly brushing against my skin when nothing was there. The slightest touch felt painful in certain areas of my body. The fatigue was debilitating and made it difficult to do my job at times. Some days it was a struggle to even get out of bed. My legs, feet, hands and abdomen began spasming sporadically and it would continue for hours at a time. One of the most challenging issues was that the heat would make me really sick and flare my symptoms, so I had to avoid being outside in high temperature or very sunny days, which can be difficult when you live in Florida. I would get incredibly weak and feel like my legs couldn’t support me. It feels almost as if I’m about to pass out, but that feeling stays until I can cool down.
At the end of March and beginning of April, I took a trip to Italy with my family — something I had been planning and looking forward to for some time. In the months leading up to the trip, I was struggling so much that I had tremendous anxiety about traveling. I had steroids to help if I had a flare, and I was able to participate in most things on the trip. I had trouble navigating the cobblestone streets in Rome at times, I was always exhausted and was in pain most of the trip, but I am so glad that I went. It was a once in a lifetime experience and I have so many incredible memories with my family. It was right around that time that I began noticing cognitive issues, including memory/retention issues, losing my train of thought while speaking, and not being able to think of words that I know very well. It scared me and continues to scare me because at times I feel like I’m losing my mind.
At the very end of May, I had a relapse and it was the worst one I’ve had to date. I happened to be visiting my family in New York at the time, and ended up having to extend my trip by 3 weeks because I wasn’t well enough to travel. I lost my ability to walk, had weakness in both legs and my right arm. My balance was off and my body was so weak that doing simple things like taking a shower on my own or doing my hair became almost impossible. I was tremoring sporadically which affected my voice at times. My glands were constantly swollen and my vision in my right eye was blurry. My neurologist prescribed a very high dose of steroids (I was taking 25 pills a day) and I had to take a two month leave of absence from my job.
In the middle of all of this, we moved from Naples, Florida to Charleston, South Carolina so that Larry could start his fellowship here, but that meant starting over once again with a new neurologist. I have not been able to find an MS specialist that isn’t multiple hours away, so I began seeing a general neurologist. I went back to work in August once I was feeling a bit better, but in all honesty, I realize now that I wasn’t ready to go back. I wasn’t well enough, but tried to convince myself and everyone else that I was. My vision was completely restored with the steroid treatment, but the other symptoms lasted much longer and some I still have now as I write this.
I unfortunately had to leave my job in early October because I was struggling keeping up with the work. Agency life is something I truly love, but it means long days depending on your clients’ needs and it became something I couldn’t keep up with. I didn’t have time to prioritize my health and I felt like I was getting worse instead of better. It’s very difficult for me to admit I can’t do something, and this disease has been extremely challenging for me because of that. I like control and order, and there is none of that when it comes to MS. I can’t predict how I’m going to feel when I wake up tomorrow or if my legs are going to cooperate. I have no idea when the next symptom is going to appear or if I’ll ever feel “better” again. I say to my sister all the time that I guess this is my “new normal,” but it makes me incredibly sad to actually believe that.
My current neurologist doesn’t feel that the lesion progression I’ve had over the course of the past six months requires a DMT. Unfortunately, some of them come with many potential side effects that can be scary. He doesn’t feel like the risks are worth the benefits at this point, but I still struggle every day with symptoms from MS. I worry they will get worse. I have to avoid extreme temperatures and high heat. I have to stretch and work on my legs every single day. At night, my legs spasm and I can’t control their movements, so they jump around while I’m in bed. It makes it challenging to sleep. I’m always in pain despite the nerve medications I’m now on. I take medication for the fatigue as well as medication to help me sleep.
The cognitive issues have not gotten better, but I play memory and brain games to help. I started compression therapy twice a week and have a few compression devices at home that I use throughout the week to help with the inflammation, stiffness and swelling. I started cryotherapy last week (3 minutes in a very, very cold chamber to try to drop the surface temperature of your skin) to help with inflammation. All of these things in addition to some other therapies I do at home every day have helped my legs. I can walk again without any issues and hope it stays that way for awhile. I spend close to half of my days now doing things to help me feel better physically and mentally. I’m incredibly lucky that I can freelance so that I’m able to have the time to do so. I know many others from some support groups that I am part of that aren’t that lucky.
Living with MS is a struggle every single day for me, but I’m trying to do everything I can to feel better. One of the biggest obstacles with any autoimmune disease is that you sometimes look and act perfectly fine on the outside, so it’s difficult for others to understand what you’re going through, what you’re battling and trying to overcome. It’s a constant struggle for me of wanting everyone around me to understand while also not wanting people to feel sad or sorry for me or worry about me. I’m constantly telling everyone else I’m fine or doing great when on the inside, most of the time it’s not true.
The good news is that I am making progress. It’s not at the speed that I’d like, but little by little each day I feel slightly better than the day before. I find solace in the fact that I’m actively working toward feeling better. So much of the time I don’t feel like I have control when it comes to the MS but it helps me to know that I’m controlling what I can.
For anyone struggling with MS or any autoimmune disease, please know you’re not alone, even on the days where you feel like you are. All of this can feel incredibly isolating at times, and that can be just as debilitating as any symptom you’re experiencing.
I’m sharing all of this because I started this blog years ago to share my life with people — the good, bad and ugly. And MS is all of those things, even the good at times, because it has helped me remember the inner strength I have. I struggle often, and the bad days sometimes feel like they outweigh the good ones, but man do I appreciate the good ones when they happen. I find myself incredibly grateful for the good days and am hopeful that they'll happen more and more.