You Know You Have MS When…

Posted on July 25, 2014 by MultipleSclerosis.net

People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
The simple task of washing your hair is exhausting
Your kids think that all you do is sleep and that you’re sick all the time
You are so tired that you cry, and no amount of sleep helps
Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
You are tired or fatigued all the time, and you can’t find the energy to take a shower
Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
Feeling well-rested is a thing of the past
You must have a plan B, C, D, etc.
You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
You’re the only one in the room saying, ‘Is it hot in here?’
When 70 degrees feels like you’re standing inside of an oven
When you can’t do any outdoor activities due to the heat
When summer heat hits the triple digits, and you can barely breathe
Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

You can’t play with your kids or take a walk with your husband
You fall over when standing still
Your upper body starts to walk, and your legs don’t get the memo in time
You don’t even realize it when your legs go out from under you
You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
You just tip over when standing still on level ground
When you wake up one morning, and you’re paralyzed on one side of your whole body
You keep tripping up over nothing
You are always dropping things
You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
Your hands are asleep and they don’t wake up
You are eating dinner and your arm suddenly jerks and your food goes flying across the table
You walk like you’ve had a few cocktails, but you haven’t had a sip
You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
You have to stop mid sentence because you’ve lost your train of thought
You take the dog for a walk around the block,and your legs feel like they are encased in cement
You walk like you are dancing to Michael Jackson’s “Thriller”
When your knees are locked as though there’s a magnet holding them together
When you go from 0 to pee in two seconds flat
You have to hold on to walls because you lack balance
You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
You can’t stand without assistance
Your head goes one way and your legs another
You have to look at your hand and tell it to move
When you can’t pass a field sobriety test while sober
Despite only being 41, you walk like your 76 year-old mother
You have to lean your elbows against the shower wall to wash your hair

Your mind isn’t as sharp as it used to be

You lose your train of thought while mid-sentence
You walk into a room and forgot why you went in there in the first place
You have the hardest time trying to say what you want to say, and your words come out making no sense
You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
What was the question?

Pain and numbness become a part of everyday life

Your feet feel like they are on fire or you have frostbite
You are numb and tingly and have burning sensations all over
You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
You feel like you are being stabbed, and you have a tingling feeling all over your body
You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
You “feel” noises that go straight to the bone with subsequent weird pain!
Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

When everyone assumes you are normal and they say, ‘Let’s go – get with it’
Your friends and family think you are fine because you look the same, so they think you are just being anti-social
You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

Keeping Your Cool During the Warmer Months to Help Manage MS Heat-Related Symptoms

Posted on June 25, 2014 by MultipleSclerosis.net

The summer months are upon us, which means warmer temperatures and the potential for a worsening in MS symptoms. Fatigue is one of the more common symptoms of MS, and it can impact a person’s mood, sleep, and overall quality of life.¹ As many of us know, there is a well-established link between MS-related fatigue and heat sensitivity,² so the warmer summer months can be especially challenging for a person with MS.

Last summer, one of the MultipleSclerosis.net contributors, Ashley Ringstaff, wrote about some of her trips and tricks for dealing with the summer heat. Since Ashley lives in central Texas, she is no stranger to brutally hot summers. She also has 2 very energetic children who love being outside, so staying in an air-conditioned house all day isn’t an option, even if she wanted it to be. Ashley’s recommends using cooling products (not just cooling vests), including those that are available through MSAA’s Cooling Program and Polar Products. She also uses an outdoor garden hose mister and outdoor fans when she is sitting on her porch, and she even likes the inexpensive handheld fans when she is following her boys around. She noted that staying hydrated, is of course, also extremely important.

Caregivers also understand the importance of helping a person with MS stay cool to minimize heat-related symptoms. Last summer, Patrick Leer shared his story about making lifestyle adjustments to help his wife during the warm summer months. He made sure to keep a cooler packed with water bottles and a neck cooler that he received at an MS walk. Patrick also mentioned unique considerations for planning a family vacation at the beach – he would book a room with a view of the beach so his wife could stay inside with air-conditioning and enjoy watching their daughter play outside in the sand. They even managed to find a beach hotel with an ice rink, which seemed to be made for families just like theirs!

Because heat can exacerbate MS-related fatigue, we recently asked our Facebook community if they experience more fatigue in warmer months, and how they manage MS-related fatigue. Here are some of the highlights from our community members’ responses:

Managing MS-Related Fatigue in the Warmer Months

Keeping cool using different devices

Soak small towels in water for your neck, face and top of your head and reload it at water fountains or hoses.
Use a cooling vest.
Carry ice packs in your pockets with a travel sized spray bottle full of cold water.
Carry a small damp towel in the spring and summer to help cool your head and face.
Use Frog Togg cooling cloths.
Wet bands that you put around your neck really help; also drink plenty of water, use air conditioners and fans.
Take cool showers.
Some individuals may benefit by wearing long sleeves and a hat when outside. Sweating is nature’s way of keeping you cool, so long sleeves can absorb perspiration and keep you cooler. Limiting time outside to 15- or 20-minute periods with rest in between can also help.

Consuming cold food/beverages

Eating crushed ice throughout the day can help.
Keeping a cold drink with you helps tremendously so you can cool yourself from the inside out. Iced beverages and popsicles help.

Other tools to combat heat-related fatigue

Exercise helps but it is sometimes difficult to shake the symptoms to get up the energy to go exercise.
Acupuncture and reflexology can help.
Try to get as much done in the morning to mid afternoon.
If prescribed by your doctor, taking a medication such as Provigil® (modafinil) that promotes wakefulness can help.

MultipleSclerosis.net moderator, Christie Germans, mentioned that she relies heavily on air conditioning as well, and she’s able to get a discount on her electricity bill due to her MS diagnosis. She recommends exploring your gas/electricity provider’s website for discounts available for medical needs. Multiple sclerosis will likely be listed in the “qualifying medical needs” list. Or, contact your neurologist’s office. You may be able to save as much as 30% on your bill! For her full response, click here.

Do you experience more symptoms in the warmer months? How do you manage MS-related fatigue?

References

1. Induruwa I, Constantinescu CS, Gran B. Fatigue in multiple sclerosis – a brief review. J Neurol Sci. 2012;323:9-15.

2. Marino FE. Heat reactions in multiple sclerosis: An overlooked paradigm in the study of comparative fatigue. Int. J Hyperthermia. 2009;25:34-40.

Music and MS – Songs That Best Describe MS

Posted on May 23, 2014 by MultipleSclerosis.net

Music can have a profound impact on our feelings and emotions. When a good song comes on the radio, we often find ourselves happily singing along to our favorite tune. One of the main reasons we enjoy music so much is that we can truly identify with certain song lyrics, and moreover, it is comforting to know that someone else may feel the same way that we do. Because MS has such a strong presence in the daily life of those with the disease, people with MS often find themselves equating their experiences with those of others, through music. We asked the MultipleSclerosis.Net community to share with us the names of songs that best describe their MS, and we’ve highlighted the top five responses we received.

5. “Stronger (What Doesn’t Kill You)” – Kelly Clarkson
Many people feel that having MS has made them stronger, overall. Kelly Clarkson’s song is truly empowering, as the chorus states “What doesn’t kill you makes you stronger, stand a little taller, doesn’t mean I’m lonely when I’m alone…” Another verse of the song that really resonates with the MS community declares “you think you got the best of me, think you’ve had the last laugh, bet you think that everything good is gone, think you left me broken down, think that I’d come running back, baby you don’t know me, cause you’re dead wrong.” The positive, upbeat nature of this song makes it a great one to belt out in the car, no matter how good (or bad) your singing voice is.

4. “Comfortably Numb” – Pink Floyd
While we like to identify with upbeat, empowering songs, sometimes we take solace in knowing that someone else is struggling the same way we are. Pink Floyd’s “Comfortably Numb” is one such song, and in this case, the song title says it all. Many people with MS experience physical numbness, but this feeling of numbness is also metaphorical. Being diagnosed with MS can be overwhelming, and sometimes people with MS just feel completely “comfortably” numb.

3. There was a 3-way tie for the third most popular song: “One Day at a Time” – original lyrics by Marijohn Wilkin and Kris Kristofferson, “I Will Survive” – Gloria Gayner, and “Monster” – Eminem featuring Rihanna. As with many battles people face in life, coping with MS is often accomplished one day at a time. “I Will Survive” may be about getting over a relationship, but over the years Gaynor’s trademark song has taken on so much more meaning for anyone struggling a battle of his or her own. The chorus of the most recent of these 3 songs, “Monster”, proclaims “I’m friends with the monster, that’s under my bed, get along with the voices inside of my head, you’re trying to save me, stop holding your breath, and you think I’m crazy, yeah, you think I’m crazy”. Some people consider MS to be a MonSter, and singing along to this tune may be just what you need to deal with the beast that is MS to get through your day.

2. It’s a true challenge not to sing along when Katy Perry belts out the lyrics to her hit, “Roar.” The chorus can motivate anyone to fight whatever battle it is that they are fighting: “I got the eye of the tiger, a fighter, dancing through the fire, ’cause I am a champion and you’re gonna hear me roar.” Tied with Perry’s “Roar” was “I Get Knocked Down (But I Get up Again) (Tubthumping)” by Chumbawamba. This song, released in 1997, embodies the idea that MS may try to knock us down, but we will get up again, and again, and again.

1. And finally, the song with the most votes was “I’m Still Standing” – Elton John. This song is a true classic that resonates with anyone going through trying times: “Don’t you know I’m still standing better than I ever did, looking like a true survivor, feeling like a little kid, I’m still standing after all this time, picking up the pieces of my life without you on my mind.”

Wondering about the other songs that were named? You can view the full list here.

What song best describes your experience with MS?

What do you wish people knew about living life with MS?

Posted on April 25, 2014 by MultipleSclerosis.net

There is often an unspoken understanding among people who have been diagnosed with MS, but it can be quite difficult for those without this condition to fully comprehend what day-to-day life is like for someone with MS. The effects of MS are far-reaching, impacting individuals physically, cognitively, and emotionally, with symptoms often unseen.

We asked the MultipleSclerosis.Net community what they wished people knew about what it is like to live with MS and to share some of the common misconceptions associated with this condition. More than 300 responded with insightful feedback. Here is a summary of the responses we received from our community members:

MS is real, not an excuse:

No one chooses to have MS, nor can we control how it affects us
Not all MS symptoms are visible; you may look okay on the outside, but feel like you are falling apart on the inside
People often make the assumption that we are faking our symptoms or that we are hypochondriacs because they can’t see what we are experiencing
The limitations associated with MS aren’t necessarily visible, and it’s not possible for others to push us past our own limits
MS can be both extremely painful and exhausting, and at times we just need to rest

MS is unique to each person and is not predictable:

Every patient experiences MS progression at a different pace; it is not a “one size fits all” condition
Symptoms can change daily, or even hourly
Having MS can be a roller coaster ride with ups, downs, twists, and turns, but there is nothing fun about it
It is impossible to understand what it is like to live with MS unless you actually have it
It may seem like MS is trying to take away your self-worth every day by slowly making you unable to do the things that you were able to do yesterday
Even if yesterday was a particularly difficult day, today may be better
MS can knock you off your feet – literally and figuratively

It can sometimes be both stressful and depressing to have MS:

MS can take away our dignity by slowly and quietly taking away our mobility and cognitive thinking
MS is a multifaceted condition that can be incredibly difficult to live with; it not only affects us physically, but mentally and emotionally as well

The effects of MS are constant and can impact more than just the individual with the diagnosis:

We never stop thinking about our MS, even when we are feeling well
MS diagnosis can be devastating, affecting both the patient and his or her loved ones
We need our friends and family to be open-minded and understanding

There is no cure for MS, but it is not a death sentence (and can make you stronger in many ways):

There is a continued need for research with the hope of one day finding a cure
There is no miracle potion that will cure MS
MS doesn’t change who a person is, but it can change what a person is able to do
Hearing a doctor tell you that you have MS can be incredibly frightening, but over time, people with MS are able to educate themselves about their condition and face it head-on
MS isn’t always debilitating
It is not contagious
MS is associated with many challenges, but these challenges can ultimately make you stronger

What do you wish people knew about MS? What do you think are the most common misconceptions about MS?

A Special Report on Oral Treatments for MS

Posted on March 24, 2014 by MultipleSclerosis.net

Health Union recently released results from the 2014 MS in America Survey, which included responses from more than 5,000 multiple sclerosis patients. The survey addressed a variety of topics that impact individuals living with MS, including diagnosis, symptoms, treatment, relationships, career, and quality of life.

A special section of this survey focused on the use of oral MS therapies. Historically, prescription treatment of MS has been dominated by injectable and infusion therapies. With the recent introduction of oral prescription drugs for the most common type of MS called relapsing remitting MS (RRMS), this paradigm is shifting towards orals, with nearly a third of RRMS patients reporting using an oral prescription.

Needle fatigue, tolerability, convenience and efficacy are the most cited reasons for people choosing oral therapies and respondents report being more satisfied with oral therapies than injectables. Of those currently taking an injectable, nearly half have considered switching to an oral, signaling a continued shift away from injectable therapies.

Overall, patients taking oral MS medications found their medications to be equally effective as injectable treatments. However, 58% of respondents felt that oral medications offered better tolerability.

More results from the 2014 MS in America survey can be found on MultipleSclerosis.Net, including the special report on oral MS treatments.

The MS in America Study was conducted online in early 2014. The goal of the study was to establish an understanding of the current state of people affected by MS. The survey included a total of 156 questions on a broad range of topics.

A total of 6,202 people started the survey. 5,710 met eligibility requirements, and 5,004 people completed the survey. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad. The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

Newly Diagnosed with Multiple Sclerosis?

Posted on February 21, 2014 by MultipleSclerosis.net

People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

Stay open to ideas outside of mainstream information, but don’t believe everything you read online
Education is one of the most powerful tools you (and your caregivers) have
Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
Make sure your doctor is knowledgeable in treating MS
Keep all your medical records

Take care of yourself*:

It’s important to manage your overall health – physically and mentally
Eat plenty of fruits and vegetables (avoid junk food)
Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
Give yourself time to get the rest you need
Don’t stop taking medications just because you start feeling better
Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

Finding an MS buddy an be an enormous health
Work with associations and experts that can help you through the processes
Look to religion if it’s helpful for you
Keep a network of friends and family that can help you with even the simplest tasks when you need it
Keep your stress levels in check:
Try to keep stress levels as low as possible – stress can be your worst enemy with MS
For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

Know your limitations but find ways to continue enjoying life
Find something to be happy about every day
Remember that having MS is the “new normal” and be kind to yourself as you adjust
Take each day at a time
Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

How do you treat your MS?

Posted on January 24, 2014 by MultipleSclerosis.net

Multiple sclerosis symptoms can vary greatly between different individuals, as can the progression of the disease. Therefore it’s no surprise that treatment strategies also vary from person to person. Since there is no known cure or “easy fix” for MS, the primary goal of treatment is to manage the disease while maintaining quality of life. There are currently a number of treatment strategies to help alter the disease course, manage symptoms, manage relapses, and support your overall physical and mental health.

In the MS in America study, 95.5% of respondents indicated that they had tried prescription medications while 85.3% were currently using prescription treatments. Although prescription and over-the-counter medications were the most frequently used treatments, a variety of Complementary and Alternative therapies were also utilized.

Nearly 80% of survey participants had tried Vitamin D and 62% tried exercise. Almost half of respondents tried changes in diet to help manage their MS and just over 10% of survey participants indicated that they were currently using rehabilitation therapies including physical therapy, occupational therapy, speech/swallowing therapy, cognitive rehabilitation, and vocational therapy.

Of these respondents, 57% were satisfied with their current treatment plan and 12.8% were dissatisfied with their current regimen (30% were neutral; n=2,854).

What treatment and management strategies have you tried for your MS? What’s worked and what hasn’t?

The MS in America Study was conducted over the Internet from November 2012 until January 2013. The primary goal of the study was to establish an understanding of the current state and trends of patients affected by multiple sclerosis. The survey included over 100 questions on a broad range of topics. A total of 3,437 people started the survey while 2,562 people completed the survey resulting in a high completion rate of 74.5%. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad.

The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.

MultipleSclerosis.net is Proud to Partner with MSAA

Posted on November 11, 2013 by MSAA

Recently, MSAA has partnered with MultipleSclerosis.net, and now we’d like to offer them a warm welcome. Since we first met the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. Last week, we had the opportunity to detail our programs and services to their community. Today, we are pleased to introduce them as a regular contributor to our MS Conversations blog.

MultipleSclerosis.net is intended to provide thoroughly-reviewed and accurate information to people with MS and their caregivers, and we invite you to read more about it in today’s blog entry. We hope you’ll find their platform as empowering and educational as we did.

Launched in March of this year, the website MultipleSclerosis.net has rapidly grown to become one of the largest and fastest growing websites dedicated exclusively to Multiple Sclerosis patients and caregivers. We are happy to partner with MSAA to give a broader reach to the excellent work that MSAA does every day to improve the lives of people impacted by MS, and we look forward to being a regular contributor here.

Produced by Health Union, LLC, the company that also develops Migraine.com and RheumatoidArthritis.Net, MultipleSclerosis.net features hundreds of pages of fully-referenced original content on such topics as understanding the basics of MS, to more advanced topics like diagnosis, symptoms, treatment and an overview of MS Research. The site also features forums where users can discuss a wide range of topics specific to MS.

In addition to this in-depth content, MultipleSclerosis.net has assembled a diverse team of patient advocate bloggers; people with MS and/or caregivers of those with MS who write frequently on real-life topics related to their lives with MS. How it impacts them personally, how it impacts their relationships with others, and stories of their own personal trials and tribulations of a life with MS.

Lastly, MultipleSclerosis.net runs polls and surveys on the site. On survey, “MS in America” was an in-depth survey taken by over 3,000 MS patients. We asked participants of the MS in America study about their early experiences with MS symptoms and diagnosis. A majority of survey participants first experienced MS-related symptoms (including symptoms that were later identified as being related to MS) in their 20’s or 30’s. Still, most respondents were not diagnosed with MS until almost a decade later.

This is just the tip of the iceberg; further results of the MS in America study

are posted on MultipleSclerosis.net and we will continue to conduct large patient surveys to further enhance the understanding of the impact of MS on people’s lives.

So in the future, we will be bringing highlights from our polls, surveys, stories and blogs here to share, but first we wanted to introduce yourselves and welcome you to join the MultipleSclerosis.net community. We look forward to contributing here.

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