About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Dealing with Insurance Denials

By Stacie Prada

Over the years I’ve appealed a lot of health insurance denials for different reasons.  I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear.  Getting denied creates an emotional response with financial consequences.  I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend.  I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change.  My insurance company wanted proof I wasn’t divorced.  I was angry and completely stumped.  How do I prove I’m not divorced?  There’s not a judge’s document that shows a person is still married.  By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them.  I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn’t been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week.  While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider.

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months.  It was stressful going without something that has been proven to slow progression of MS.  Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me.  I wish it had occurred to me to look online for examples of appeal letters.  While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention.  It astounds me to think of all the money people are paying that they shouldn’t.  All because it looks like every step has been done and they’re told the remainder is their responsibility.

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration.  I think the people answering phones are just following orders and trying to keep their job to support themselves and their family.  Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder.  Advocating for my care doesn’t need to feel like a battle.  By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me navigate insurance appeals:

  1. If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.
  2. Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.
  3. Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.
  4. Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos.  If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.
  5. Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time. Waiting will only compound some issues and leave you with less time to resolve them.  If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases.  And sometimes it’s good news!
  6. Keep copies of documents with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.
  7. If feeling the tendency to shut down, take a break. A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days.  Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.
  8. Share your experience with friends or coworkers on dealing with medical appeals. They often have experiences of their own with advice that may help you in your situation.  You may also be helping them be better prepared for dealing with their own insurance issues.
  9. For writing appeal letters, look online for examples. I searched for “prescription appeal letter,” and found many terrific examples to follow.  If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.
  10. Remember you don’t always have to figure out everything on your own. Look for your resources.  There are online suggestions from organizations about dealing with insurance.  Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining.  Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.

*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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Make Your Web Browser More Reader-Friendly

Visual disorders affect more than half of all individuals with MS, which can make even simple tasks more difficult.  Everyday things take more effort and more time when your vision is impaired in some way, including reading or doing anything online.  In this day and age, almost everything can, or needs to be done online, making surfing the internet unavoidable.  While many websites make an effort to be visually interesting and engaging, as well as readable, it can still be a challenge to read the information on your computer screen.

Every web browser is different, but there are some tricks that you can use to make your online experience a little easier when looking for information on the internet:

  • Font Size – If the type on a web page is too small, easily zoom in to make the font larger by pressing the “Control” key (on a Windows computer) or the “Command” key (on a Mac computer) and the “+” key. To zoom back out, press the “Control” or “Command” key and the “-“ key.
  • Clickable Content – An easy way to navigate around a page to find a link you are looking for is to hit the “Tab” key on your keyboard while on a web page. This will start where you are on the page and highlight the first link within view. To move further down the page, keep hitting the “Tab” key until the link you wish to click is highlighted. If you accidentally go past the link you wanted to click, press and hold the “Shift” key then press the “Tab” key to go backwards up the page. Press the “Return” or “Enter” key to click a highlighted link.
  • Cluttered Page – Most web browsers also offer the option of a “Reader Mode” which will remove ads, leaving only larger text and associated images, making the page easily readable. Web browsers that offer this mode include: Chrome, Microsoft Edge, Mozilla Firefox, and Safari. These extensions or settings may not work on every web page, but they can make the overall online experience a little easier.

For more details on how to adapt your browser to meet your accessibility needs, visit the browser-specific links below:

What tips, tricks, and tools do you use to improve the appearance of what you are reading online?

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Stories to Inspire

By Kaitlyn Gallagher

On a lovely weekend in mid-September, the Rock ‘n’ Roll Marathon Series took over Philadelphia’s Benjamin Franklin Parkway with thousands of dedicated runners. Whether participating in the 5K, 10K, or half marathon, runners represented countless nonprofit organizations with colorful shirts, logos, and team “swag” to raise awareness for their particular cause. I was lucky enough to represent #TeamMSAA as a runner in the Rock ‘n’ Roll 5K along with a few others, including another MSAA employee, Emily!

I felt a bit out of my element running in a large scale race that Saturday morning – I’m certainly no athlete and even spent a few weeks training leading up to the race to make sure I was prepared! However, there was one runner on #TeamMSAA that was no stranger to racing for a cause. John Derry Jr., our top fundraiser for the Rock ‘n’ Roll Series in Philadelphia, has run many times in support of different organizations. This year, John discovered that he could run in support of the MS community, and knew that he had to sign up for a very personal reason.

“MS has had a great impact on my life due to my grandmother having MS. My grandmother has shaped the man I am today,” said John. “I have been taking care of her my entire life. I am currently her primary caretaker. Over the years of caretaking I have grown to learn how to take care of others and pay attention to other’s needs.”

Meeting John was an incredible experience – he is a truly selfless person who not only takes on the responsibilities of caring for his grandmother, but spends his free time training and running to help others living with MS. He has taken his passion for running and turned it into a mission to serve others, and for that MSAA is extremely thankful! John raised over 700 dollars that will go toward providing members of the MS community with free programs and services like cooling vests, mobility equipment, MRI funding, and more.

John plans to continue running in other races, and is currently applying to get his Master’s degree to become a Physician’s Assistant, another decision influenced by his years as a caretaker. We wish John the best of luck in all of his future endeavors, and thank him on behalf of the MS community for his amazing work as a caretaker and advocate!

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MSAA Publishes New Booklet About MS Progression

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We here at MSAA are pleased to announce another new publication, Understanding Progression in MS. This valuable resource is designed to help people with MS and their loved ones better understand what is happening when progression in MS occurs and provides a number of treatment options – from the newest approved disease-modifying therapy to symptom management and wellness strategies.

Understanding Progression in MS includes:

  • An overview of the background information and details of the types of MS
  • An overview of how progression in MS is thought to develop and how it is evaluated
  • Current treatment options, noting specifically how treating inflammation differs from treating progression
  • Detailed information on several prominent symptoms and symptom management
  • Strategies for healthy living with progressive MS

Check out this latest publication and view or order your copy today!

 

Funding for Understanding Progression in MS was made possible by Sanofi Genzyme.

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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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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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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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Ask the Expert – Temperature Dysregulation

Featuring Marie Namey, RN, MSN, MSCN
Mellen Center for MS Treatments & Research, Cleveland, OH

Question: I find that I am often hot, then cold, then hot again. It seems my internal thermostat is messed up and I am well past menopause. Is this caused by MS and why?

Answer: You are not alone in experiencing these symptoms. We often hear from our patients that they feel hot or cold for “no good reason.”

The medical term is “temperature dysregulation,” meaning that it’s difficult for the body to maintain normal temperatures and results in periods of feeling hot or cold when there has been no change in the actual temperature indoors or outdoors. MS can cause temperature dysregulation. This temperature dysregulation can also make MS patients susceptible to extreme hot or cold.

Some individuals with MS may have impairment of autonomic functions, the functions that are not thought about consciously for the systems to work. Autonomic dysfunction develops when the nerves are damaged. Interestingly in a recent “Patients Like Me” survey, 69% of patients with MS who replied said that their temperature dysregulation is severe or moderately severe.

Also to avoid attributing every symptom to MS you should be checked for other causes of your symptoms such as anemia, thyroid disease, poor circulation, malnutrition, diabetes, or vitamin deficiencies. I always recommend regular health checkups and open dialogue with your MS health care provider and primary care provider.

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