MultipleSclerosis.net Stories Throughout the Decade

The stories section is a special and unique section of our site where community members can share any aspect of what life with multiple sclerosis (MS) is like. We've seen some of the most amazing storytellers share their perspectives, thoughts, and experiences over the last 10 years.

Today, we wanted to celebrate the community members who have shared with a selection of stories submitted throughout the last decade of MultipleSclerosis.net.

Popular stories from the last decade

I Wish They Knew

Excerpt: Here comes my BIG, "I Wish They Knew" list. I wish they knew how badly I want to return to my regular level of social interacting. I wish they knew that I can't snap a finger and make the "brain fog" go away. . . . I once shared with my best friend that I feel like people have forgotten about me because I go M.I.A. sometimes. I call it "self-preservation" and call it a societal public safety measure.

Cognitive Dysfunction: A Scary and Invisible Fight

Excerpt: I’ve battled multiple sclerosis for fifteen years. Over that time, it has affected my ability to walk, hold objects, and to see. It has also made me extremely fatigued and has caused a ton of pain. To me, none of those are as bad as the symptom I am talking about today: cognitive dysfunction (sometimes called "brain fog" or "cog-fog"). This is the symptom that has stolen the most from me, from my job to friendships. It is also one of the least documented and most often missed symptoms of the disease, yet one of the most common.

Treatment and Genetics

Excerpt: I was diagnosed 6 months after my eldest daughter was born (26 years ago) at the age of 27 after quite a lot of hospital admissions and then a follow-up appointment by myself where the consultant said, "Well I think you know you've got MS don't you?" I had no idea. I went on to have a second daughter 3 years later having been assured that there was no genetic link. At 23 years old she has just been diagnosed as was my mother at 63 years old.

Maybe, Maybe Not? A Waiting Game

Excerpt: With episodes of numbness in my hands and feet, vertigo, a groin spasm that would make my leg give out and extreme pain in my elbows and forearms, and being diagnosed with extreme vitamin D deficiency, my doctor got me in for an MRI on my brain. Results showed NO lesions. Years passed with some of the same symptoms appearing and with extras added to the mix.

It's More Than Just Mind Over Matter

Excerpt: I thought it would be easy. You know, mind over matter, positive thinking, putting good vibes out into the universe and all that jazz. Whoosah. Breathe in, breath out. I thought if I put my mind to it, I could control it. I was wrong. I was so wrong. . . . My husband Maarten was out of town, so it was up to me to walk my dog Chaka that morning. As I headed out the door, I was determined that I wasn’t going to allow MS to hold me back.

Cough and MS

Excerpt: Have you ever heard of cough as a symptom of MS? No? Neither have the doctors. . . . I am so frustrated as I lie in bed on a beautiful Palm Sunday instead of going out to breakfast and to church. I have a paroxysmal cough. If you don't know what that is, think about MS symptoms that come on suddenly and go away just as quickly, like a spasm. Well, I have a spasm in my throat that makes me cough.

Stacy MS story

Excerpt: My symptoms or some of them come and go. Some get better. And some never go away. My feet still feel like they fell asleep and just woke up – pins and needles. It never goes away. I can't get them to completely wake up and the feeling to return to normal. Sometimes I feel like I'm walking with balled up socks under the balls of my feet. I also have slight (not as extreme) tingling in my right hand and sometimes right arm.

Why I Don't Appear Happy for You

Excerpt: An open letter to my friends and family – I have to start by saying I truly do love you and your life accomplishments. I promise, I do. I also am incredibly self aware, which means I know how I appear when you tell me about something incredibly wonderful happening in your life. Perhaps you're buying a house, getting married, having a child, or started a new career – Whatever the case, I'm elated for you. I may not come off that way, however, and I'd like to explain why. Multiple sclerosis has made me many things, envious being one of them.

"How can you even walk with numb feet?!"

Excerpt: When I finally dragged myself to hospital, all I got was being pushed from A to B, from B to C and back to A again, as nobody could really figure out what was wrong with me. Actually, when my boyfriend brought me to the neurological clinic, one of the nurses blurted out "What – you say your feet are numb? Well how can you even stand here and walk around if that's so?" After a lumbar puncture they sent me home, doctors words were: "Well if it doesn't hurt and it does not seriously affect you, I guess you'll have to live with it."

The “Osis’s” of Multiple Sclerosis

Excerpt: Over the years since my diagnosis in 2008, I have encountered and adapted to so many obstacles that I don’t always even know I’m doing it. It’s not until I sit down to make “the list” for my next doctor visit that I recognize what I have been living with and living around. Every day has the potential to throw something new at me. Pain, numbness, weakness, vision loss cognitive decline . . . and I just do the best I can to keep rolling with it the best I can each day and be grateful.