My MS Story - Diagnosed at 39. Single, Motherhood, and Mental Health
One night before Christmas I went with a client friend to a Johnny Walker Christmas party in the city. I had never drunk scotch or whiskey, but it was supposed to be a “special blend,” so I took a sip. It was as awful as I anticipated. I was 39, living in New York City, and about to embark on the biggest challenge of my life.
Feeling numb and exhausted
The next morning, I woke up to go to work and realized the left side of my face and neck and top of my shoulder was completely numb. I have anxiety on a good day, but the past month or two I had been extremely stressed out from work and personal issues and was just so exhausted all the time. I chalked it up to the Johnny Walker “shot” and stress and left for work. By afternoon I felt like other parts of my body were going numb (all on the left side). I decided to call my primary doctor to ask if this happens with stress.
My primary doctor works at Cornell Weill / New York Presbyterian Hospital and was always spot on about things. After speaking to him, he told me he was getting me an appointment at the neurologist just to be safe. I was lucky. I got in a few days later and the neurologist said he’d like to do a brain, spine, and thoracic MRI. I was taken aback, but I did it a few days later, and the day after that I left for my sister’s house in Georgia for Christmas.
I was exhausted and felt so “heavy,” kind of like the x-ray apron you put on when getting x-rayed. It got to the point at Christmas where I couldn’t get out of bed. My family even went to go see very close family friends, and I just could not go. I just felt so “off.” I was a little nervous to get the results, but I still thought it was stress and my anxiety in overdrive. I was still numb.
Worried that I had MS
I left a few days after Christmas, because I had to head back to the city for a work event. When I got to my apartment, I had mail from the radiology department. I opened the letter and didn’t understand any of it, so I Googled words like “delimitating myelin” and t-cells and lesions. I realized it was essentially saying that there were traces of multiple sclerosis. The only friend I had with MS was a family friend of my mom and dad's, and he died from it. He couldn’t speak, walk, eat. He blinked to communicate with us toward the end.
I immediately called my dad. He was silent at first and then said, “well just wait till you see the doctor again and see what he says.” I could tell he was concerned because his voice changed to a serious voice. My mom got on the call but didn’t say much. I went to work the next day despite still being in shock and feeling like absolute garbage, and I remember packing for my work trip crying.
So many emotions
Before I left for the trip, I saw the doctor. He confirmed that there were signs of MS and got me an appointment for a CAT scan, which was scheduled a few days after I got back. That trip was a blur. We had another big event coming up and I had partners who had activations and filming onsite, not to mention dinners and social gatherings. I pushed as hard as I could to get through those days. I was smiling, laughing, and trying so hard to not show what was going on.
Every time I got back to my hotel, I just fell to the bed and cried and slept. When I got home, I got another letter from the radiology department with CAT scan results. Much of the same. By the way, I’m still numb at this time and had some numbness on my left side back. Went to work a day later and then back to the neurologist. He got straight to the point and somewhere in his words I heard “it’s not a death sentence anymore.”
I don’t really remember much of that visit or how I felt, as I was in a bit of shock and trying to process. He said I had one more test that was needed which was more involved than the scans. A spinal tap. The only spinal tap I knew was the movie. When it was explained, it sounded like something that I wouldn’t want to ever do.
What my doctor said changed my life forever
I had another work event coming up (January through March is our event season). I was still numb and so fatigued. It took all my energy just to go to work and get home. I cried often and not just because of the diagnosis, but because of the unknown and how my life would be. It was a lot to take in. I went to our event and pushed through each day. And when I got home, I slept for a day and then back to work. (Quick side note- this was all before I learned how to manage my days and energy).
I remember having the spinal tap the following week. For that I took two days off: one for the procedure and one for the following day. You weren’t supposed to “move much.” Those results came in right after a third event, and it showed certain cells in the fluid; I still to this day do not know what that means. My next appointment would be with a neurologist who specializes in MS. I’m still going to her today.
I’ll never forget my first appointment with her. We talked about my symptoms and others that I had that I didn’t realize. I likely had MS for a few years which, looking back, explained a lot of things. But the one topic that hit me the hardest was when she asked about motherhood. She asked, “Do I want to be a mother?” My stomach sunk and I tearily said yes. I always wanted to be a mother. I never saw myself not being a mother. Or a wife. But I was 39, single and not even close to getting married. I asked her why and she asked me what my relationship status was and if I was married, engaged, or had a boyfriend. I said no. And what she said next changed my life forever and not in a good way.
I still wanted to be a mother
I learned that day that being on MS medication is often not good for pregnancy.1 So, for those wanting children, they may need to stop taking the medication. Because I was 39, my biological clock was ticking. And because I wanted children, she asked if I had considered trying to conceive on my own. The answer to that was of course no. I would have met my husband sooner or later, I told myself. But what I realized what she was saying was, “if you want to have children, you should try now and a few months after giving birth, I could start on the drugs.” I had to go home and think about what I wanted to do. And what I wanted to do was cry. And sleep.
Some may say this is harsh, but it wasn’t. All women know that there is only so much time you can have a baby. I had always thought about getting my eggs frozen, but my gynecologist told me there was no need. I’d meet someone. If I knew then what I knew now, I would have gotten those eggs frozen at 25. My MS doctor did me a favor by bringing up motherhood, because it would come up at some point and may have been too late.
So now I have a lifelong disease that has changed my body and am single with no husband or baby. Or money. I didn’t know what to do, but what I did know was that I needed to at least have a chance at being a mother. I didn’t know how I’d afford it or be able to manage, but the thought of not having a child was worse. I mean, I always imagined I’d be married to Keanu Reeves and have 2-3 kids and a Volvo.
Trying to have a baby
So, I called my MS doctor and told her I was going to wait on the drugs and try to have a baby on my own. That next year and a half was the worst time of my life. And I’ve had some bad downs over the years. I had 5 IUI’s and 2 IVF’s. All while working with most of my co-workers having no idea what was going on. I had told HR about MS and IVF and they were very understanding. I could write a whole other story on fertility treatments. I gave myself shots at night, in the morning, and at work, and had blood tests almost every day before work started. This all while still reeling from MS symptoms, stress, and anxiety. I didn’t go anywhere except the office, work travel and the fertility clinic. I put everything on my AmEx card and took years to pay that off. One IVF took, but in the end I never got pregnant.
At least I can say I tried, right? No. If I could go back in time, I wouldn’t have done any of that. After a year and a half, I had so many relapses with MS. I had more numbness, hand and feet tingling, shaking, balance, cognitive issues and even sight issues.
The fatigue never faded, and I’ve had to learn to manage it. A colleague whose wife has Chronic Fatigue Symptom gave me great advice on this. He said “fatigue is like you have a quarter tank of gas every day. You must decide each day how to use that quarter tank and if you go over, you must use up less gas the following day or you’ll just always be out of gas.” So now I must have a day before and day after if I have a busy day ,so I can put my best self out there. I’m literally doing math every day.
I finally started my medication, Gilenya, and cried on and off for months knowing I would never be a mother.
Dealing with difficult MS symptoms
Years went by, and every few months I’d have flare ups. There was always constant fatigue. That never went away. I had several symptoms came up on and off during this time; most are the usual suspects. One of the scariest was eyesight issues like double vision and depth perception, which are not so fun in NYC. I noticed at an event I was at and pretended like nothing was wrong, just hoping I’d sense a wall or an object. Coordination, especially with my hands; still have this now. I can’t pick up small things easily or drink without my hands shaking. Numbness and tingling.
And the scariest of all which continue to haunt me are cognitive issues like focus (I’m now on Adderall), speaking (I can’t find words), and memory (short term). I used to love doing presentations in front of people. Now I’m scared. The latest random symptom is my left vocal cord is partially paralyzed. I can’t yell or talk loudly anymore. I realized that one when I tried to yell at my dogs and no sound came out. Now I have a very monotone voice. Hoping that it goes away on its own.
They also say MS can cause depression and anxiety, but I’ve had both since I can remember. I started anti-depressants right after college and have been on and off since. More on than off if I’m being honest. I’ve struggled the past 5-6 years with mental health, and I’m not sure if MS is exacerbating it or if it's just my normal self. If my mental health issues are the result of MS, then that would be the worst symptom of all, because it is all-consuming and never really goes away. Even with meds. This isn’t talked about much with MS, but it should be.
Now heading into my 10th year
I’m now heading into my 10th year of my MS diagnosis. I’ll be 49 in August. I am in a new department now with a great boss who understands some of the challenges. I have friends but a small handful (if that) of ones who I trust completely and feel secure that they will always be there for me. MS is not easy for those you love. I don’t go to dinners or parties anymore because I need to rest, and it SUCKS. It always sounds so good when I make plans, but when the day comes, I often bail, which is something I absolutely hate. I haven’t dated because I don’t have the energy and since I don’t go out, I don’t meet anyone.
I wish I could say things were great and I was killing it but in all honestly, I’m still coming to terms with it. I feel like a shell carrying a body inside of me that I don’t know. As a former college athlete and fitness lover, I don’t know who that person is inside me, and I really don’t like her. She’s boring and not physically what my brain thinks she is. Between work, paying bills, errands, cleaning, cooking, dog walking, me walking and even car maintenance and house chores, it takes all my strength to do just that. I always thought I be a career woman, running a large team and kicking down doors for women. But it’s so hard with MS, and I fear that will never come to be.
Looking back, there are so many things I would do differently in my life. Especially when it comes to marriage. I kept thinking, I’ll find him. I’ll know when I know, like so many told me over the years. To not only be loved but to have someone have my back and be there for me when I need someone would be so comforting, and I just didn’t understand that 15 years ago. Partnership is key with any disease. It's hard to do it alone. I’d be lying if I said I’m not scared about the future and what I’ll be able to do and financially set myself up for life after work. I’m terrified.
I’m still new to MS and still coming to terms with it. I learn something new almost every day. I’m still trying to go easy on myself and not get angry or frustrated, but it’s a work in progress and some days are better than others.
I want to help others
I do know I am a better person than who I was. I was always someone who had empathy and compassion. I think when you have mental health struggles, you understand on a deep level that everyone is going through something. But now, having this disease, I understand so much more. Whether it’s an illness, mental health, racism, violence, or gender discrimination, it’s all a battle, and I find myself protecting those that need a voice. Heck, even I need a voice advocating for me sometimes.
The only thing I can really control now is how I treat others. I hope that when this is all over, I would have played a part in helping some people, whether personally or professionally, find a better place in this world. Being down doesn’t mean you’re out. And to all my new fellow MS’ers, especially the women out there, I hope sharing this helps in a small way. Not being a mom is still something I haven’t come to terms with yet. But I know now that if I had been able to conceive, I’m not sure I would have been able to manage the way I would have wanted. I didn’t realize at that time how challenging fatigue would be.
I now have two crazy little dogs who are my world and feed my need to nurture and love, and they in turn provide me unconditional love and companionship. I may not be the mother I thought I would be, but I am a mom and responsible for two little lives. And I’m OK with that.
Were you misdiagnosed with something else before receiving a MS diagnosis?