Everyone Has a Unique Diagnosis Story

Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling.  After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…

“I was 38 but took 8 years to get the diagnosis!

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

 “At 31… Was told it was a brain tumor…

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything.  Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

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Changing Seasons and Changing Routines

Fall is upon us and as the leaves change color and pile up on lawns across the neighborhood, parents and kids are begrudgingly adjusting to a new school year routine. Humans and animals are naturally creatures of habit – just ask a toddler or a pet during Daylight Saving Time – and changing up a routine can be stressful for anyone.

When you are living with a chronic disease like MS, a change in your daily routine can do more than just throw you off-balance for a day or two. Whether you are going through an employment change or you need to switch to a new medication with a different dosing schedule, there are some small things you can do to help yourself adjust to a new routine:

  • Start Small – Whenever there are big changes, it can feel overwhelming to focus on everything at once. Instead, try focusing on one small change or task at a time.  You can feel more accomplished as you cross each individual task off your to-do list.
  • Use Your Current Routine – Sometimes, the easiest way to establish a new routine, is to adapt the one you already have in place! For example, using your favorite TV show or weekly lunch with a friend as a reminder to take medication can make it easier to keep yourself on track.
  • There’s an App for That – Just take a scroll through the app store for your phone or tablet and you can find many different options to help you organize your day or manage your medications, including MSAA’s My MS Manager™ app. These apps can help you ease into your new routine by setting reminders and audio alerts on your phone or tablet.
  • Don’t Be Afraid to Try Something New – Change of any kind can make us feel uncomfortable or afraid because we don’t know what to expect, but that’s ok. Depending on how dramatic the change is, it can take up to 3 months for a new routine to feel like a habit. So don’t get discouraged if you aren’t feeling comfortable yet with your new routine. You may just need a little more time!

Change is almost always hard, even if that change may be for the better.  With a few of these strategies, hopefully, you can more easily navigate whatever life throws at you today.

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Changing Routine

By Lauren Kovacs

I was employed outside the home years ago, but I chose to stay home when I started my family.  Just when I was ready to go back, after 12 years, the MS had other plans.  Routines and MS are a must, for me now.  I love routine!  I can’t do “last minute Lucy” or be spontaneous.

I have the same foods for breakfast and lunch.  This helps me keep my bowel routine.  If I have not gone potty that morning, I rarely leave the house. Staying close to my diet is tough, when away from home.  I love junk food.  Gosh, I love it.  I really love gluten too.

I nap at the same time everyday. Even my dog knows when naptime is.  I schedule everything before noon.  Even Provigil let’s me sleep.  Routines are essential.

You do have to bend the routine at times, however.  Just make sure you have a plan, if your routine takes an unexpected turn.  Knowing ahead of time what to do, if your routine is pushed off a cliff or thrown into a muddy ditch.

A recent two-day beach trip left me for dead. I knew the MS sharks would circle the chum, but I did not have a plan.  I ate out and while it was tasty, the gluten boat threw me in with the chum.  More MS sharks circled.

It took days of fatigue, tears, stomach issues and fights with other germs to come out on top.  I conquered the mountain.  When I only needed one nap a day, I knew the current was changing.

Two weeks later I was still in bed by 8pm but, my three boys had a blast so, it was worth it.  I still was face down in the bed trying to get a nap.  Alas, I was finally able get into the bed and didn’t need to sleep on the floor.

MS is not glamorous.  Have plan B and C.  Routines are wonderful, but have a back up plan or two or three.  Being thrown off a cliff might seem ok, if you can climb up.  Once you make it to the edge safely, then what?  Don’t think that because you feel ok that you are.

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MS Skills

By Doug Ankerman

It can be difficult to accept when multiple sclerosis steals your ability to work.  A lifetime of training and talent gone.  Poof.  I know it was for me after giving over twenty years of sweat and soul in radio and advertising.

But because you have MS doesn’t mean it’s over, man.  You simply need to change your perspective.

Having MS has given me (and probably you) a whole new skill-set from which to draw upon.

Let me explain with a tongue-in-cheek look at an MSer’s new level of expertise…..

Meticulous Note Taker:  You write down everything to recall dates, times, appointments, names, to-do, shopping lists and more.  Sticky notes are your blessing.  And because your handwriting is so sloppy – only YOU can decipher your scribbles.

Medical Equipment Operator:  You are quick to determine which piece of equipment you will need to accomplish a task.  “I have the energy to walk today with canes.”  Or, “I feel weak so I’ll use a scooter.”  Also, you are the only one who knows how to properly collapse a rollator/wheelchair.

Personal Charging Station:  You can doze off anytime, anywhere, in any situation or body position.  Only you can snooze in a straight-back chair.  Ten minutes to recharge and refuel and you are good to go.

Pro MRI Taker:  You have done this so many times there is no fear of the tube.  You thumb your nose at a Contrast.  By knowing the difference of the machine’s bings and boings, you know when you can wriggle, shift and scratch.

Restroom Consultant:  Because of MS, you have tried them all.  Therefore you know the best and the worst.  The clean and the filthy.  The accessible & the not so.  Because of your expertise, some call you the “Triple A” of public bathrooms.

Floor Surface Evaluator:  You have the ability to determine the walk-ability of the environment.  You are alert to surfaces that are rough, slippery, thick, plush, wet or uneven.  Uphill and downhill are no match to an MSer’s precise judgment.

Finally,

Stain Lifter:  As one with MS you know how to get out food stains.  You know when to blot and when to dab.  When to rinse in cold water or when to pre-soak.  While some carry an EpiPen, those of us with MS are never far from a Tide-To-Go.  Being sloppy has a down-side, but an MSer is always prepared.

See, you DO have skills and talents that set you apart from the rest.  Most importantly, you have the confidence to look MS in the eye and prevail.  Multiple sclerosis can’t take your determination, intelligence, or guts unless you allow it.  Hold your head up.  Be proud.  And keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

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Apple Cider Donut Cake

I hope everyone is starting to enjoy the beginning of fall weather!  It is starting to get cool, but not cold. The sunsets are just gorgeous and the leaves are beginning to change pretty colors. What more can you ask for…OK donuts/cake…my thoughts exactly.

One thing I can’t get enough of during the fall is apples.   The fresh juicy apples are just waiting to be baked in some delicious way.

Try this recipe and see what you think.  I love to bake this time of year.

It warms my soul and my tummy.

Ingredients:

  • 1 large Granny Smith apple, peeled, cored, and chopped
  • 1 1/2 cups apple cider
  • 1/2 cup milk, at room temperature
  • 2 1/2 cups all-purpose flour
  • 1 1/2 teaspoons baking powder
  • 1/2 teaspoon baking soda
  • 1 teaspoon salt
  • 1/4 teaspoon ground nutmeg
  • 1/4 teaspoon ground cloves
  • 1 teaspoon ground cinnamon
  • 1/2 cup of unsalted butter, softened
  • 3/4 cup sugar
  • 1/2 cup packed light brown sugar
  • 3 large eggs, at room temperature
  • 1/4 cup vegetable oil
  • 1 teaspoon pure vanilla extract

Cinnamon Sugar Coating

  • 8 tablespoons granulated sugar
  • 2 teaspoons ground cinnamon
  • 1/8 teaspoon ground nutmeg
  • Dash of salt

Directions:

Preheat oven to 350°F.

Grease bundt pan with baking spray.

In medium saucepan, bring chopped apple and cider to boil over medium-high heat. Reduce heat to medium and simmer until most of the cider has been absorbed and apples are easily smashed with a fork, 10 to 12 minutes. Remove pan from heat, cool 5 minutes, and then pulse in food processor until pureed.  Stir in milk into apple puree; set aside.

In medium bowl, whisk together flour, baking powder, baking soda, salt, nutmeg, cloves and cinnamon; set aside.

In large bowl, beat unsalted butter, sugar, and brown sugar on medium speed until light and fluffy, about 3 minutes. Add eggs, one at a time, beating well after each addition. Add oil and beat until incorporated, about 1 minute.

Decrease mixer speed to low and add flour mixture in three batches, alternating with apple mixture, scraping down sides and bottom of bowl with rubber spatula as needed. Increase speed to medium and beat mixture just until combined.   Add vanilla and beat once more, just to combine.

Scrape batter into prepared pan. Bake until cake tester inserted in cake comes out clean, rotating cake halfway through baking, 35 to 45 minutes. Take out of oven and let cool upside down on top of a serving dish for about 10 minutes before removing from bundt pan.

For the Cinnamon Sugar Coating: Combine sugar, cinnamon, nutmeg, and salt in small bowl. Sprinkle warm cake with cinnamon sugar, using fingers to rub it onto sides.

Cool cake completely, about 1 hour.

Happy Baking!

 

Update: Originally this post stated to let the cake cool upside down for 30 minutes, instead of cooling upside down for 10 minutes.

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The Best Next Turn: Changing Careers

By Stacie Prada

Hands down one of the best changes I’ve made since my multiple sclerosis diagnosis is changing careers.  While I still work in the same organization, I work in a completely different field.  Still, I draw upon skills and knowledge I’ve gained from every job and experience I’ve had in my life.

My career path has in no way been anything a career counselor would have designed to get to the job I have today. In college, I never would have believed that I would have my current job and love it. I also never would have imagined that at age 38 I would get diagnosed with multiple sclerosis and realize with hindsight that I’d had MS since my early 20s.

The career I had previously was great for me. I was good at it, and it pushed me daily to grow and learn. I was rewarded with promotions, pay and increased responsibility.  I liked that I contributed to my community in a way that helped people through complicated requirements and paperwork. I liked being an expert in the field and making suggestions that would allow them to do their projects with the least hassle.  That job also required nonstop interaction with people in stressful situations, and it took a lot of energy physically. I would cram my weekend with rest to recharge enough to take on the next week.  Sometimes it worked, but more often it didn’t.

When I look at my employment path since the age of 16, I see that I consistently looked at what was available and with each choice made the best next turn. I’ve been in industries with no perceived connection to each other. They include food service, retail, skilled labor, government, business, and office. I’ve worked for myself and for others. I’ve worked at restaurants, a ski resort, a woodshop, a real estate office, an art gallery, in a building and planning permitting office, and a financial office.

A few years ago, someone approached me to assume their job when they retired. I hadn’t even known that person was watching my work! The job had never occurred to me as remotely possible for me, but now I have it and love it. It took a lot of effort to make the transition, but the payoff was huge for my quality of life and the pay cut worth every penny.

In my new position, I still learn and grow every day, I contribute to my community, and I help people.  I also have a job with a mix of tasks that allow me to engage with people as well as have focused project work without interruption. The mix helps me accommodate my fatigue issues immensely.

There are no guarantees for anyone for what tomorrow will look like. An accident or unknown health condition can take anyone out of the workforce at any time. I know my condition will progress, and someday I will need to change my employment or even stop working all together before I’m ready to retire.  My job now works for me today, and I hope it works for me for some time.

While having MS can make me feel vulnerable with my employment possibilities, I find I’m happier when I don’t prematurely limit myself.  When I come from a place of confidence in my abilities, I have hope and feel I can achieve anything I really want.

Career advice I would give myself and others is the same for starting a career as I think it is for winding one down.

  1. Build relationships. Sometimes the people we work with see something in us that would be good for a job we never considered.
  2. Learn whenever possible. Pursue things that interest you even if they don’t seem related to your job at the time. I’ve found in my career that no time spent learning has been wasted even when I changed fields. Everyone brings a different set of skills, knowledge and background to every job. It all adds value even if the fields seem unrelated.
  3. Know your strengths, and build on them. Understand you have a weakness as a consequence of that strength.
  4. Know your weaknesses, and get so good at coping skills or accommodations that they don’t hold you back.
  5. Be open to opportunities that surprise you and haven’t occurred to you.
  6. Do a good job wherever you are on whatever you’re doing.
  7. Be someone that people like working with and want to have around. I’m a firm believer that we’re all replaceable in our employment.  If we die tonight, someone else will eventually fill the job. People help and look out for others they like and respect.
  8. Never burn a bridge. People you thought you’d never see again sometimes boomerang into your life again. Forgive them and don’t hold a grudge for poor behavior, but don’t forget it either since they’ve shown you who they are. (I’ve had people treat me poorly given they didn’t respect my position, and later I was their boss or someone they really needed to work with. Seeing them suddenly treat me much better is off-putting.)
  9. Know when a job isn’t right for you anymore. Focus on making the choice that feels right for you each point along the way. If you change later, it won’t be failure. It’ll just be a redirect.
  10. Be wary of making decisions from a place of fear. It’ll stifle your potential and happiness.

I’ll never willingly leave a job without having my next life chapter ready to start.  As my body declines with age and illness, being the best me at each point will undoubtedly lead me to see the best next turn.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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That Tuesday Morning…

“I love the man that can smile in trouble, that can gather strength from distress, and grow brave by reflection.” –Thomas Paine

There are more lines to this quote, but this first part has always stuck out to me. It struck me the first time I heard it studying Thomas Paine in school and it’s come back to me many times since. It’s simple, directive, yet weighty in connotation – I love it for that.

Every September 11th two thoughts run through my head as I start my day. I think about my childhood friend and her stepdad who lost their mother and wife in the Pentagon. Simultaneously, in that moment of grief for them and others I’m incredibly thankful that my own dad, who was at work that morning like always in the Pentagon, made it home. Today is one of those days that we all share and don’t share at the same exact time. As a country, we watched together as the day turned from a sunny Tuesday morning to a confusing Tuesday afternoon to a devastating Tuesday night. But every person will tell you an individual story of where they were and what their experience was. It’s one of those days that’s burned into our collective memories for better or worse, and if we close our eyes we can recall more details from that one day than almost any other.

For me Tuesday September 11th, 2001 was a slow motion day of disbelief in a school only about a half hour outside of DC in a Virginia town heavily populated by military families, many of whom work in the 5 sided polygon, as teachers tried and failed desperately to keep students sheltered and calm. It’s almost strange not to think back to where I was today 16 years ago when the speakers in my Algebra class cracked to life. The shaky voice of the principal came over the intercom and the school went totally silent, as if all the air had been sucked out of the building. I can still feel what it was like wandering down halls wanting to reach out to home but terrified of even picking up a phone. Seeing tears around every corner as students sat on the floor in groups or hovered in corners holding themselves to keep from breaking and leaned against lockers unable to think of what to do next.

I can close my eyes and feel myself being hugged by people who were strangers an hour before, hugged just because they knew where my dad worked. What it was like finally running home from the bus much later than normal as the stars came out and not realizing how long I’d been holding my breath till I saw my dad sitting distraught and looking lost on the couch through our open front door. Sitting with my friend in her room on the edge of her bed hugging and silently crying just a few miles from where rescue crews were working. Sitting with her on the floor of their living room as we all waited for the list of names while our parents sat silent listening to news correspondents try to formulate coherent sentiments.

I know what day it is before my alarm goes off and I even hear the news click on. Before I start my NY Times app or open my social media feed. I know what day it is because there’s a pull to it, a weight to the hours that other days don’t have. I know what day it is regardless of what day of the week it falls on because of what it means to me, to my neighbors and friends. What it means to the families of men, women and children who lost their lives and everyone who carries their memories. What it means to the service personnel who have given their lives to protect our country and those who reenlist for another tour to continue that work.

For myself, and I know so many others, today is about reflection. It’s about taking time to honor and love and gather strength, and not necessarily about never forgetting the events that happened, the events that it set in motion, or the loved ones we lost, but about remembering that the people we are given and the time that we have, however long it shall be, should mean something. About seeking out the reasons to smile in the face of troubles and allowing ourselves to grow braver and more resilient after we reflect on where we’ve been and all that’s happened. I’m reminded of that and challenged to be sure to take all that I’ve been given and make it mean something, to make it count… Let it remind you today to make yours count too.

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MSAA’s Newest Publication – MS Relapse Toolkit

We are pleased to announce our latest booklet, the MS Relapse Toolkit.  This useful, spiral-bound resource provides information on why relapses occur and what you can do in advance to prepare for these unexpected and often significant flare-ups in disease activity.

The MS Relapse Toolkit includes:

  • In-depth details on relapses and symptoms
  • Checklists to share with your doctor and your family
  • Items to discuss with your healthcare team
  • How to plan ahead for a possible relapse
  • A listing of FDA-approved and experimental treatment options
  • Crossword puzzle with relapse-related terminology

Check out this newest resource and view or order you copy today!

 

Funding for the MS Relapse Toolkit was made possible by Mallinckrodt.

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Employment Changes

For this month’s MS Conversations blog we wanted to focus on the topic of changes in routine, but with this thought, it was important to highlight employment changes as well, as this is something that comes up often when talking with clients. The timing is appropriate, as Fall always marks a time of change in the year itself, not only in the season’s colors and temperatures but with the familiar sights of back to school and holiday displays (because of course stores are already doing this!).

There are many individuals within the workforce living with MS, and oftentimes its symptoms can impact one’s work routine and abilities in their position. This can be very frustrating and challenging for those affected because with it comes the added stress over job security, self-worth and independence. Because of how our society views work and the roles we fulfill, many people identify themselves by their job and what they do for a living—so if this changes, one’s self-perception can change too. But it’s important to know that there are resources available to help accommodate changing needs in the workplace or help to find another position if an overall change is needed. Separating one’s self-worth and perception from one’s job role is going to be a continuous feat that society as a whole must work on, because individuals are and should be defined by more than just the work they do.

For those who have human resource representatives in their workplace sometimes it’s a good idea to start the discussion with this department if you need something modified in your role; whether it is your schedule, job location/environment or something else, there may be procedures in place for how to ask for these in the workplace. The Job Accommodation Network is a helpful source of information on employment accommodations as well. And for additional help receiving workplace accommodations or finding employment, a Vocational Rehabilitation office is a resource throughout each state that assists those living with disabilities on information and resources regarding employment needs and changes. Working with one’s doctor/healthcare team may be another avenue to assist with employment matters too, especially when discussing symptom issues and their (potential) impact.

Change can be difficult to encounter at times so it’s important to know what resources are in place that could help. Being aware of MS symptoms and how they could impact needs in the workplace can be a good starting point.

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September 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Jennifer Attwood – Parker, CO
Bears
Jennifer Atwood - Bears

About the Artist:
“My life really took a turn sideways in 2007 diagnosis with MS!

I have written and illustrated a children’s book and I enjoy creatures of the ocean SO much that I have a saltwater aquarium now too. I love to illustrate and paint watercolors because it’s not expensive and gives me a free spirit of letting ALL the pain go too. I am still the girl who had a passion for horses, hiking and fishing, even though I can’t do those things anymore.”
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