MS Clusters – How many of your friends and/or family also have MS?

Posted on November 24, 2014 by MultipleSclerosis.net

There has been a great deal of research examining the role of genetics in the development of multiple sclerosis over the years. The current understanding is that MS is not directly inherited, however, genetics appear to play a role in increasing a person’s risk for developing MS.¹ Experts currently believe that those who develop MS have inherited something in their immune system that makes them more reactive to whatever is causing the immune system to attack myelin. It is possible that something in our environment, potentially viral or bacterial, triggers the autoimmune response that leads to MS in a person who has an inherited susceptibility in their immune system. Because so many questions remain, we decided to ask our Facebook community if they are a part of an MS “cluster,” where multiple friends and/or family members have MS. Over 170 people responded, and here’s what many of them had to say!

Several people in my family have MS

My sister had MS. I have it now. She had PPMS and I have PPMS. There were 7 MS cases within 2 blocks of where I grew up. I have heard that genetics loads the gun and the environment pulls the trigger.
My dad and his brother and sister all have MS; that’s 3 out of 5 siblings.
My sister and I were both diagnosed with MS this year, one month apart. Interestingly my sister is adopted, so we are not genetically related. We both want answers. It’s so tempting to blame something environmental. No one else in family has ever had it, and my twin brother is fine.
I have two kids and two cousins with MS!!
Two of my maternal grandmother’s cousins, my mother, her sister, my father and now myself. We all live in Victoria, Australia, which is quite cold and has higher rates of MS and Vitamin D deficiency than almost all the rest of the country. ‪None of the neurologists we see had ever come across such a “cluster” before .
‪I’m the 6th cousin on my father’s side of the family to be diagnosed with MS.
My dad, his sister, my sister, my half sister and I all have MS. That’s 3 of 5 kids (2 boys, 3 girls) with the same father that have MS.
My aunt has it and my great grandmother died from it. I believe my lifestyle in my 20’s was the ultimate trigger. But eating a mostly vegetarian diet and drinking tons of green tea has helped me in more ways than I could have hoped for.
I’m the third generation in my family to have MS.
I have MS, was diagnosed in ’87, but in retrospect I’m pretty sure I’ve had it since my early 20’s. In 2005 my daughter was diagnosed at 25. My family was puzzled that it isn’t supposed to be hereditary! Then in 2007 my husband and her father were diagnosed. He and I both grew up in the same town; maybe its genetic and maybe environmental?
I have 2 cousins on my mom’s side that also have MS. I’m the 3rd to be diagnosed.
I am the 4th in 3 generations that we know of.
I’m 55 and I’ve had it since age 30. We think my grandmother on my dad’s side had it, but she passed away in 1983. Now one of my daughters has it and one of my nieces has it; that’s it for now.
My daughter was diagnosed at age 16 years old, and 5 years later I was diagnosed as well.
My mother’s cousin, first born, had it. Her brother’s first born had it, and I, her first born have it; my brother’s first born has it. All were/are males except for me. Is there a first-born child link?
My sister and I both have MS, and we are the third generation to have this in our family.
My friend has 69 first cousins, and 19 of them have MS.
I have MS, my mother has MS, and her mother had MS and died from complications when she was 46 years old.

There are a lot of people who live near me who have MS

There isn’t a “cluster” in my family, but there is in my neighborhood. The house on left, house on right, house across street, and me – each has someone with MS. That is my whole block.
My sister had MS, but no one else in the family going back 10 generations had it. HOWEVER, a woman on the next farm had MS and now a young woman on the closest farm to ours has been diagnosed with MS; that’s in a community of 40 people.
I’m the only one in my family. Three of us from a very small country town who went through primary school together have it.
My co-worker had MS, then I had it, then another co-worker got diagnosed…all while active duty Air Force serving in same building. It’s a very interesting connection.
There’s a cluster here in northern California.
I grew up in the town of Tonawanda in Western NY. It’s located in between Buffalo and Niagara Falls. Many people I went to school with have MS.
I don’t have a family cluster, but 3 of us, all female, same age, lived on same block within 4 houses of each other, have MS. There could be more that we just were not in touch with after moving away. We were all diagnosed in 2005.

I’m the only one in my family who has MS

No one in my family on either side has MS.
I have it, but I’m the only one in my family. I was told that MS wasn’t hereditary.
I am the only one with MS. Diagnosed at 33 and I am 40 now. Praying no one else in my family ends up with it.
I am the first in my family. We went way back and couldn’t find anyone.
My dad was the first and only in our entire family.
I am the only one in our huge family.
I was told that MS is not hereditary?
I was told that MS runs in the family, but usually skips a generation; I am the first on both side of the family to ever be diagnosed with MS. I was diagnosed in 2007 when I lived in CO – which has the most people to be diagnosed with MS.

There are multiple autoimmune or neurologic diseases in my family

My mother has Crohn’s Disease. My youngest son has Type 1 Diabetes, my eldest has allergies, and I have MS.
I’m the only one with MS, but I also have neurofibromatosis (NF). I have over a dozen family members with some type of neurological problem. I have a nephew who has NF and Parkinson’s, and several family members who have epilepsy. I am 58 and was diagnosed with MS about 14 years ago. I’ve had NF all my life. I passed it on to my son and daughter.
I am the only one in my family to have MS, but my sister has Lupus.
My father’s three cousins (MS), his sister (ALS), he (peripheral neuropathy), my husband (MS), our daughter (MS – diagnosed at 10!)!!
As far as we know, my middle child, my daughter, is the only one to have it. My mother’s family all came from Sweden, which is a hotbed for MS. I don’t fully understand a lack of Vitamin D being a factor. We live in PA where we do get a lot of sunshine.
Four out of 6 of my siblings have MS, and my mother died from ALS.
My grandma had MS, my aunt has Lupus, and I have Neuromyelitis Optica.
I was diagnosed a year after a maternal cousin was diagnosed with MS. My cousin’s mom had severe RA, and my mom’s fraternal twin has Lupus.

Reference:

1. Aronson KJ. The epidemiology of multiple sclerosis–who gets MS and why? In: Kalb R, ed. Multiple Sclerosis: The Questions You Have – The Answers You Need. 5th ed. New York, NY: Demos Health; 2012:21-27.

MS in America – The Use of Oral Therapies for the Treatment of MS

Posted on October 24, 2014 by MultipleSclerosis.net

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

The Impact of MS on Everyday life

Posted on September 24, 2014 by MultipleSclerosis.net

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

Disclosing MS at Work – Community Experience

Posted on August 22, 2014 by MultipleSclerosis.net

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
I lost my job when my employer found out.
I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

My boss is understanding, even though I can’t do everything I used to do.
My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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.

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