Meet - Bob

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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Meet - Lilith

Rheinland-Pfalz, Germany

When were you diagnosed with MS? 2022

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?

Receiving my MS diagnosis was a real blow to me, especially since I've already been through a lot in my life. I used to tell myself that at least I was "physically healthy", even though everything else seemed to be falling apart. I knew my legs could carry me to where I needed to go, no matter how challenging the journey was. But then, I received my diagnosis of MS, which felt like a cruel joke. This has had a significant impact on my life, and even though I can't trust that my legs will still carry me, I know that life must go on.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

The first time I experienced a flare-up, it primarily affected my vision, and unfortunately, some of the issues have persisted. I now see double when looking at things in the distance and everything is generally more blurry than before. In addition to my vision issues, I am also struggling with fatigue and depression, as well as memory loss and other cognitive difficulties. Another symptom I experience is tingling in my legs after walking, but thankfully it disappears after a few minutes.

So, how do I manage it? For me, the key is acceptance. This condition is a part of my life now, and I cannot change that. But by accepting it, I am able to manage it better.

#3: Who/What has been your most important support system?

Having the ability to still do my art is my greatest source of support. My family tries to assist me with my illness, but it is still overwhelming for them. Due to my lack of energy, I find it challenging to interact with my friends, and when I do, I prefer not to discuss my illness. While I have met many incredible people online, these virtual friendships are not as fulfilling as real-life connections.

Therefore, my primary support system is myself and my art. As an artist, I am always artistically focused on visualizing my thoughts. Basically, my art is an endless monologue of me trying to explain myself to myself. Since my diagnosis, I have shifted my focus from photography to painting due to my vision problems, but I will return to photography someday. I now paint my symptoms, mainly the invisible ones, to help myself and others. By using symptom painting, I aim to raise awareness of our invisible illness and its complexities. I want others to see how much it impacts our daily lives, even if it is not visible to the naked eye.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

Luckily no, I don't have difficulties walking at this time.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I stay positive and motivated mainly due to my art! My art series, called "A Thousand Faces", focuses on Multiple Sclerosis, and I have already depicted over 30 symptoms through my artwork. Each symptom has its own unique face, allowing me to personalize the experience and enable others to confront their illness. By visualizing the symptoms, we are better able to understand and empathize with what it feels like to live with MS.

#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?

My words of advice would be that this is not the end, it's a new beginning.

#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?

As I said, I'm an artist and I'm currently working on an MS-related art project, that I have big plans for in the future. But since they're in the future, I'm not giving more details on that just yet. Stay tuned!

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Meet - Jess Hunt-Butterworth

North-West, United Kingdom

When were you diagnosed with MS? September 2016

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?

When I received my diagnosis, I had a range of mixed emotions. On one hand, I was relieved to finally have an explanation for the symptoms I had been experiencing. However, I was also understandably scared and confused about having an illness that I had little knowledge about. It took a long time for me to receive a proper diagnosis. The reason I received my diagnosis was mainly because my parents were so persistent in advocating for me. Eventually, I was diagnosed with migraines with aura. I needed to have an MRI before being treated for it. However, It was during the MRI, that my lesions were discovered, and MS was eventually diagnosed.

Although MS has had a significant impact on my life, it has not been entirely negative. While it can be challenging, I have also found that it has made me more resilient, courageous, and confident in myself.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

The symptoms that impact my daily life the most are fatigue, spasticity, neurological pain, and weakness. I also suffer from optic neuritis. Which has caused a permanent reduction in my peripheral vision and sometimes affects my entire visual field. Along with these physical symptoms, I also struggle with depression, which emerged after my diagnosis. However, I have received treatment and support that has greatly improved this aspect of my health.

In terms of treatment, I have undergone Lemtrada therapy and I take several medications for symptom management. I also receive care from physiotherapists and I use a tens machine to manage pain.

#3: Who/What has been your most important support system?

My family has been my greatest source of support. My mum fought tooth and nail to get me listened to, when I was just too tired to fight. I strongly believe that I wouldn’t have a proper diagnosis without my mum, because, they labeled my symptoms as anxiety or stress from the beginning. But she did everything in her power to have me believed. The rest of my family have been amazing throughout my journey too. My younger sister has been by my side through everything and she is my best friend. My late grandfather drove me to and from college everyday, because, I wasn’t up to taking public transportation. So without him, I would no’t have received A's in my classes. My father and brothers have also been a huge support. I owe a lot to my entire family.

My animals are a huge part of my journey. My cat Agnus has saved my life more than once. She is amazing. We call her my medi-cat. Because she lies on my limbs, before they go numb. It's like she knows before I do and if I’m doing really poorly, she’ll lie on my chest and not go anywhere else. My Labrador Daisy has also helped me a lot too. Because she has been ill for most of her life she makes me feel like she understands how I feel too. We used to spend countless hours just sitting and watching the world go by, before she passed. My boyfriend is also very understanding. He is able to support me when we go out and he makes sure that I’m ok.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I rely on crutches frequently. Sometimes I use one for extra support or sometimes I use them both, if I feel weak or when I get dizzy. Although I've used a wheelchair on several occasions, it's mostly been to attend events that my legs won't allow me to navigate through.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

A big part of how I stay positive is my animals. It’s hard to be sad for too long with the crazy bunch of pets we have. But a cuddle with my cat Agnus or my dog Pippa, can solve a world of issues.

I’m also very into arts and crafts. I get a lot of joy from simply coloring on days my body can’t do anything else. The people around me keep me positive. I like to remember on days when I’m not motivated, just how far I’ve come. I also try to be proud of what I’ve managed to achieve, since being diagnosed. I’ve done some big things, like skydiving and getting A's in my classes. I take the most pride in the little things, like when I am able to get out of bed or when I allow myself to just do nothing but rest. These experiences motivate me as I reflect on the numerous challenges, Ive overcome already.

#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 would say it’s okay, not to be okay. You can be sad or angry, but remember to keep hope alive in your heart and know that this is not the end of your life, it’s just the beginning of a new chapter! Connect with other individuals with MS, either through group settings or individual pages, for encouragement and support. Keep in mind that each person's journey with MS is unique. Since my own diagnosis, I've accomplished incredible feats that I never thought were possible. So don't believe that having MS means you're incapable of achieving remarkable things in your life, because you absolutely can!

#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 started my Instagram @jess.withms and a YouTube channel to spread positivity, as a means of support and information for those who need it. I also spread general awareness of MS to everyone regardless to if they have it or not. I felt compelled to create these social media channels because, having reached the five-year mark since my diagnosis (which is when I began the channels), I've learned many valuable insights that I wish I had known earlier. Therefore, I decided to put this knowledge to good use and assist others who may be in a similar situation.

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