Michigan, USA
When were you diagnosed with MS? September 2021
What type of MS do you have? Relapsing-Remitting MS (RRMS)
#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?
Finding out that I had MS was oddly satisfying. Finally, I had an explanation for why my body was suddenly revolting against me. I had the answers to so many things like:
Why on August 1, 2021, my fingertips in my right hand went numb.
Then over the next 7 days, numbness traveled up my arm, across my chest, and down my left arm to my fingertips.
Why that same numbness moved from my chest up into my neck, then down my torso, past my waist to my toes.
It also explained why for weeks, I felt like "Andre the Giant" was squeezing my torso so hard that, I could barely take a breath.
However, It didn’t make me understand why the 1st neurologist I saw told me, it was all in my head and a product of stress. He was right on one part, it was in my head. But, it wasn’t stress. It was the multiple lesions on my brain that continued down my spine that were causing the issue.
While at work, on Sept 17, 2021, at 1:30 pm, I found myself holding onto the wall for dear life to stop from falling. So, I sent my boss a text and told him that I had to leave and drove myself to the emergency room. I did not understand what the hell was happening. After the doctor tried to discharge me with the same, "it’s in my head" attitude, that’s when my wife, my advocate, and my guardian Angel, stepped into action. She demanded more tests. From there I think she pissed off the doctor so much that he decided that a Sphincter Test was in order. Good thing he was a little dude. Seriously, this is when his attitude changed. I failed the Sphincter Test. Next, we did a bladder empty ultrasound and I failed it too. At this point, they took me directly to have an MRI of my lower back, for fear that I may have a spinal tumor. The test showed nothing! At this point they admitted me and I spent the next 7 days getting poked and prodded. I looked like someone had beaten my arms with a bat, they were so bruised from the needles. I spent at least 6 hours in MRIs looking at my entire spine and brain. The day after the MRI's, my neurologist came to see me. It was 9:15 am on Sept 19, 2021. At that moment, my life changed forever. That day will always be tattooed in my brain, like the tattoo on my left arm. He told me that in his 40-year career, he was 99% certain that I had MS. He said he couldn’t say 100% for legal reasons until we did a spinal tap and truly determine if it is MS. Well my results were positive. They measured the number of Oglinocal proteins in my cerebral spinal fluid. The range for a person without MS is 0 - 1 bands. I had 12. Therefore, I was definitely positive. There’s so much more to this story I could share. Maybe I need to start a blog on it, tell me what you all think...LOL.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
Depending on the day, I have different MS Symptoms. Currently, a normal day consists of numbness in my fingers, hands, and arms. It is as though they have fallen asleep, most times. My eyes are a crapshoot. It's like Forest Gump said and I quote “Life is like a box of chocolates, you never know what you are going to get”! That’s the best way to describe my eyes. Some days I can’t read my computer monitor, while other days my eyes are ok. The brain fog and fatigue are a whole story by themselves. They dictate my limits. My brain buzz feels like a jolt of electricity going through my head that I can actually hear; as well as feel, and then my eyesight flutters. Since I was diagnosed, I have had tinnitus so bad in each ear that it sounds like a train screeching to a halt 24/7. I have grown somewhat accustomed to it, so when I think about it, like now, it increases in volume. I take Dimethyl fumarate (generic Tecfidera) to hopefully slow the progression of additional lesions. Time will tell if it has helped. The damage that has been done is done! I will not ever be normal again but hopefully, we can stop or slow the progression. The only thing that helps with my symptoms is rest. Sleep helps ease some of the issues too.
#3: Who/What has been your most important support system?
My wife and my sister have been my number one (1) advocates. My wife currently works in healthcare and won’t take "NO" for an answer. She pushed the doctors to do what was needed and figure out quickly what my issues were. My sister is a 30+ year high-ranking medical professional. She just retired as a Dean at a college near our homes. She was able to decipher, as well as, dig for information. To this day, she still researches for me and sends me information. I love them both very much.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
Currently, I am not using my cane. Occasionally I need to pull it out, if I’m having a bad day. Back in 2021 and early 2022, I had to use it 100% of the time. I had an issue with falling down. I fell so hard at the end of 2021, that I had to have my left shoulder and bicep operated on, because, the fall damaged them so bad.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I’m able to stay positive through the love and support of my 3 kids, my wife, and my extended family. Since my diagnosis, I try to eat healthier. I’m not sure if it helps or not. But that’s ok, it’s still tasty.
#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?
I have a 2 fold approach to staying positive. First, I stay positive knowing my family loves and supports me. Secondly, I’ve found that talking to others in similar situations helps tremendously. It lets you know you are not alone.
#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?
I haven't started an MS business yet. However, I have started social media accounts that have enabled me to connect with thousands of other warriors in the same situation. Follow me on IG @ms_detroit_dad or Twitter @ameray1
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