Here on BlackDoctor.org, we have written about Multiple Sclerosis (MS) many times, and hopefully the content we’ve given you all has been helpful! With that, sometimes I believe the best way to understand and learn about something is to hear someone’s first-hand experience. My best friend, Nia, has MS. I decided to ask her some questions as a young Black woman with MS and what a relapse is like for her to gain an understanding about relapses and MS as a whole.
Give me a brief history about how you were diagnosed and what led up to that, and what your first relapse was like too.
The shortest version I can give about my diagnosis story goes back to 2015 with my first MS symptom which was vertigo. I was attending my math class when all of a sudden the room started to spin and it was spinning out of control. I informed my professor that I was not feeling well but as I was walking out of the classroom I passed out.
The only thing I remembered after that was being in the emergency room with my mom and telling her that the room was just spinning uncontrollably and I didn’t know what happened.
Since MS was not an option for a diagnosis at the time, I was misdiagnosed with meunière disease (an extreme version of vertigo). After 5 years of “remission”, my “new symptom” flared up and it was optic neuritis. The optic neuritis flare-up led to the true diagnosis of my MS.
READ: How to Know if Your MS Relapse Needs a Doctor
How do you know you’re having a relapse? What are your symptoms?
When it comes to multiple sclerosis (MS), my MS symptoms are chronic fatigue, optic neuritis and vertigo. For me, vertigo happens more frequently as I currently have a 10-15mm lesion on that portion of my brain.
So when I do experience a vertigo relapse, I can only tell if I’m having one when I can’t concentrate on my task at hand. Other times, I will never know when another relapse will happen because it will just happen at the spur of the moment.
How often does that happen?
My relapses happen very seldomly. Since I was diagnosed at an early stage of MS (relapse-remitting multiple sclerosis - RRMS), I was able to hop on medication to help slow the progression of my MS.
Because of these meds, I am able to not have so many relapses at one time.
However, because MS is a degenerative neurological disease, my medication could stop working and I could potentially have an
unexpected relapse. That’s why it’s so critical to constantly go to the doctor and continue to get tests and MRIs done to see how far along the MS is.
What is your immediate thought when you have a relapse?
My immediate thought is, “Oh goodness, I need my mom.” She is my lifeline/guardian when I’m in need/find myself having a relapse. Of course, my next line of thought is “I need to get ahold of my neurologist (neuro)” but that’s when she comes in and helps with the phone calls, taking me to urgent care or emergency, and whatever medication I need to take.
READ: Top 5 Ways To Prevent A MS Relapse
What is your medical plan when you have one?
Unfortunately, I don’t have a set medical plan since I left university.
However, my current plan is a fight or flight response (in a way). If I’m at work, I just tell my boss I have to leave and I immediately come home and figure out what medications I need to take or make my way to urgent care while calling my neurologist.
What helps you recover from a relapse?
REST! I know other patients with MS can testify to this too, but resting is so important for our bodies. For those who are undereducated about MS, our nervous system is constantly under attack by our immune system. So when we have a relapse, it brings us down and hard (like a slap back to reality kind of hard). So definitely rest is needed from a relapse recovery.
READ: What You Must Know About Relapsing MS
How do you take care of yourself?
It's a working progress in my world and as of now, I’ve just been trying to journal, meditate more, work out, drink tea instead of coffee, and change my diet. Again, all working progress but all in the name of better health.
Do you have any advice for people who may be experiencing a relapse?
Please go to the doctor! Write down when you start experiencing symptoms, how long they’ve been lasting, and see if you can get in to talk to your neurologist.
If you feel like your neurologist/nurse is not listening or hearing any of your symptoms or dismissing them, please seek a second opinion and find someone that is willing to listen to you.
It always helps to have a doctor or a nurse that can listen to you, understand your symptoms and have a plan of action to help slow down the progression of your MS.
If you or someone you know may be experiencing symptoms of MS, please get an appointment to see a neurologist as soon as you can so that way you all can start the process of how to slow the progression of MS.
Hopefully, people with MS can identify with Nia’s story and loved ones and people who know and/or support someone with MS have gained more insight. I’d like to give thanks to Nia for sharing her story with us.
