The first “Ask Me Anything” on MultipleSclerosis.net!

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You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

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March is MS Awareness Month, & I’m More Aware Than Ever


By: Jeri Burtchell

I don’t know about you, but life with MS makes “awareness” unavoidable for me. I start the day with a symptom check, happy when I can make it out of bed and put one foot in front of the other. As I progress through my day, I’m constantly reminded of MS at every turn. It might be the alert on my phone that reminds me to take my medication or a check-up for the clinical trial I’m in. It may even be my drop foot that trips me up and sends me into a catbox face plant. And every once in a while it’s a wistful sadness as I take stock of all this disease has robbed from me. I try not to dwell on things I can’t change, but still I am “aware”.

March is MS Awareness Month–when we draw others into our world, giving a glimpse into what our new reality has become, in order to build understanding and compassion. Very few of us who have MS need our own awareness raised.

Sometimes sharing with family and friends can be awkward. I catch myself feeling like I’m whining or complaining when really all I’m trying to do is explain what life with MS is like. Just trying to raise awareness. Sometimes I close up and choose not to share, simply because it means I’m forced to think about it myself when that’s the last thing I want on my mind.

But during March I feel an obligation to “do my part”. I want more heads nodding in understanding than noses wrinkling quizzically at the mention of “multiple sclerosis”. I want more people saying “guess what I heard about a new breakthrough for MS!” The only way that’s going to happen is by all of us sharing our stories, or drawing people in somehow.

We might not have an ice bucket challenge on our side, but there are things we can do besides just posting pictures of awareness ribbons. And there are ways to work in a little levity so people aren’t just awkwardly trying to move on after your conversation has left them feeling sorry for you, or worse, confused. I’ve been giving this some thought and here are some ideas I’ve come up with…

If you’ve lost sensation in your hands, you could ask your friends to put mittens on and try to make it through their morning routine (all except for shaving or pouring coffee, maybe). Tell them you can’t feel things or control your movement as well as you once could. For some people with MS it feels like wearing gloves or mittens.

jeri blogOr how about a “Sit-N-Spin for MS”? Do they still make that toy? Get grown adults to challenge each other to spin like crazy while someone takes a video. When they get up to walk they’ll be walking like we do with MS, stumbling around and bouncing off walls.

When others are forced to experience things that closely resemble symptoms of MS, sometimes they are profoundly moved. “I get it, now!” is something I hear a lot.

If your family and friends aren’t up for the MS experience, maybe recording your thoughts on living with MS in a video would help. Things that are hard to say face to face can be easier to share in a video sometimes. Healthline.com has launched a campaign called “You’ve Got This!” where those with MS are encouraged to submit a video of their experience, giving hope to the newly diagnosed.

Each time you share your experience, whether with your friends at home, through posts on social media, or even videos enlightening and encouraging others, you are building awareness and drawing the attention to the bigger picture.

To end this disease we’re going to need a lot more research, and that means a lot more funding. When people understand how MS can impact our quality of life, the awareness spreads. When you use your own story to engage others and spread the message, it can be a very empowering experience.

Not only will you be helping others to understand what we live with every day, but you will gain so much satisfaction from feeling like you’re doing your part as well. We might not be able to cure MS ourselves, but we don’t have to sit back and passively take what this disease dishes out in silence. Compassion starts with understanding. Understanding comes from communication.

Be the voice of MS, if only for one month, or week, or even a single day this year. You won’t regret it.

Resources:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Photo credit: oddharmonic

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

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Myoclonus – heightened sensitivity and MS

There are many unpleasant symptoms that are well understood to be associated with multiple sclerosis, like fatigue, cognitive impairment, and spasticity. But there are also symptoms that occur in people with MS that aren’t commonly discussed, and may actually be overlooked by patients and physicians. One of our contributors, Matt, wrote an article about how his “startle reflex” is extremely sensitive, and it actually has a detrimental effect on his quality of life. This symptom, also known as myoclonus, impacts many people with MS, but it appears that many people don’t realize it was actually related to their MS. After reading Matt’s article, “Myoclonus – Why do I startle so easily?”, many of our community members shared their thoughts and experiences with us. Here’s what several of them had to say!

I experience this too!

  • I have this too!!!! Loud noises such as a loud TV or radio. People talking loudly or children screaming. My senses are all affected, including my hearing, eyesight, and smell.
  • So THAT’s what that is!
  • I have this problem too and I get really agitated by it. I’ve always been jumpy, but more so in the past 5 years.
  • I have this too. It’s gotten to where I can’t even be where there are large groups of people, and even the sound of my own voice will rattle me. And I have gotten to where I don’t like to talk or socialize at all because of how much noise bothers me.
  • I am also very sensitive to noise and I have strange sea like sound in my left ear.
  • Thank you Matt for an excellent accounting of your journey with Myoclonus. I too, have had a major relapse and experience a higher sensitivity to certain things, one being sound. My neurologist and I have been working on subduing the worst and working our way down.
  • Klonopin does not work for me. I take Nucynta at night and it helps, but the side effects are very unpleasant. It’s a very strong narcotic for pain. It takes away the “jerky” movement but it makes me incredibly anxious. I have not found anything else to remotely make the myoclonus better. I have high hopes for the future of medicine because I cannot fathom anyone living like this for the rest of their lives.

I didn’t know there was a specific diagnosis for this symptom!

  • I decided to share this as some of my friends might find it interesting. It is part of a long list of very odd symptoms I have acquired, and it was helpful to me when I found that this “weird sensory sensitivity” had a name, myoclonus. Psychologically, for some reason, the fact that there is a name for this condition is validating, and helps, somehow, to know that there are others dealing with this odd affliction that is not easily understood.
  • I’ve always thought my exaggerated startle reflex was related to MS, but this is the first time I’ve seen it in print.
  • I didn’t know what it was going on. It’s even worse in evening with the TV, my husband talking over the TV, the dog barking at the cat, etc. It’s sensory overload!! Now you’ve validated that it’s an MS symptom.
  • Good post Matt, I have same symptoms, but flashes of bright light, sound and other stimuli, including stress, are involved. I had not tried to find out what it was called, but I knew it was brain and spinal lesions behind it – I am glad to hear it has a name.
  • Oh my goodness, this was one of the new symptoms I developed about a year ago! My phone going off would startle me, the door slamming throws me into a panic attack, loud noises especially in the evenings seem so much louder and ear piercing.
  • I have this really bad and the doctor, not my neurologist, always told me it was my Graves’ disease.
  • I am so grateful to read this article. I developed this startle problem in the past 10 years since I was diagnosed with MS. I remember at times I was so startled it was actually painful. I don’t seem to do it as much as I once did, but good to know I wasn’t crazy. Thanks for your article.
  • I can not thank you enough for writing about this because, like many I never connected this with being a symptom of MS and I never told my neurologist that this was a frequent experience of mine.

People don’t understand the impact this has on my life

  • I was never so resentful. I have to keep reminding people who know I have MS to calm down so I can calm down too.
  • If someone raises his voice I begin trembling. I’m young, but old enough to not be comfortable about that observation. It’s getting worse too
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  • I knew startling was MS, but it’s nice to know that others are affected by people walking behind them. I had someone come around my desk to look at my computer and I got so nervous I had to ask him to move away from me. I felt like a great big “meanie”, but you have to do what you have to do.
  • This particular symptom has affected me tremendously in the social aspect. For many years I could not have been more frightened to be around anybody doing anything because they feared that I would have uncontrollable muscle spasm. The reactions I got were not totally bizarre, however I noticed that it was not just me who was disturbed by my symptoms, yet most people tend to feel very uncomfortable around me because most people think that they are causing me to be scared.

I have something similar

  • For anyone who is experiencing sensitivity to sound, there is another condition called “Hyperacusis” that involves sensitivity to sound without apparent evidence as to the cause. The primary difference between the two, from what I’ve learned, is that it does not (necessarily) involve the muscular activity, but more often results in pain, fatigue, and a multitude of other varied cognitive symptoms. There are a few subcategories of hyperacusis; we just recently discovered “Acoustic Shock Disorder” as the most likely diagnosis.

What about you? Do you find that you startle easily? Did you know that this could be a symptom associated with Multiple Sclerosis? Share with us in the comments!

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The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
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  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

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Having a Stress-Free Holiday Season When You Have MS

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Nutrition and Multiple Sclerosis

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As we wrap up this month focusing on reaching out to supportive professionals, there is one other group of professionals that plays an important role in the overall health of individuals with MS. One of the top questions asked in regards to MS care is around the idea of a diet for MS, or which foods to avoid for individuals with MS. Unfortunately, this is a difficult question to answer as there has been no hard science that indicates that any particular food groups are specifically beneficial or not to those with MS.

With MS being a very individualized disease, meaning that it affects each person in a different way, it is difficult to say that one thing will work for everyone.

Just as MS is a very individualized disease, understanding and creating a nutritional plan must be individualized as well. Meeting with a dietitian or a nutritionist may help to better understand the foods and nutrients that your body needs in order to work properly. By working with a professional, he or she can help to safely monitor the changes occurring in your body based on the foods that you add or withdraw, depending on your plan.

Talk to your doctor about a referral to a dietitian or nutritionist in your area. You may also wish to reach out to your insurance provider to learn about insurance coverage for these visits. Licensing and education can vary between those in the nutritional field, it is important to do some research on the professional and their background and beliefs about nutrition. Some nutritionists may have a belief in herbal supplements and other forms of natural healing while others may not. Knowing what you are comfortable with in regards to your treatment and matching that with the appropriate practitioner can aid in the overall process of crafting a healthy regimen for you.

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

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).

Lenght-on-time-MS-patients-have-been-on-therapy05

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.

Reasons-why-MS-people-switch-to-oral-medication08

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.

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Planning for a Doctor’s Visit When You Have MS

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Being prepared and asking questions may assist in the overall care you receive at your doctor’s appointment. Taking control of your medical care by finding your voice and advocating for your health will help you to feel more involved in your health care decisions.

Well before your appointment, get in the practice of writing down questions you wish to address with your doctor. A journal or binder can be used to keep track of these appointments. Sometimes it is helpful to have one binder for all medical professionals so that you can review notes from all appointments. Dividers or clips can help organize one doctor or specialist from the next. If questions come up for your primary care while you are visiting with the neurologist, you can add them to the section for the primary care.

Before the appointment, prioritize the questions that are more important at that time. Often appointment time is limited, so by prioritizing the questions, you will assure that what is most important to you at that time is what gets addressed.

It can be a challenge to manage the patient-doctor relationship, especially if your doctor is not used to you asking questions. You certainly do not want to come across as aggressive by demanding the doctor answer questions. Before the appointment, make the doctor aware that you would like to discuss some concerns. By being upfront with the doctor, he or she can make sure there is enough time. Some doctors may prefer to follow-up and discuss questions through a phone call or e-mail.

Asking questions is important but so is making sure you hear and understand the answers you get. Taking notes during an appointment can help to clarify things after you have left the office. Having a care partner or family member at the appointment may also help in remembering some of the details of what you heard. If writing is a challenge, perhaps try using a voice recorder (with the doctor’s permission) to help re-play what was said during the appointment.

If you are having trouble understanding or are confused, ask your doctor to explain again. Ending your appointments with a summary can help to ensure that the doctor hears that you have understood the directions or information provided to you.

If there is something you are not sure about, ask for more information. Many doctors’ offices provide brochures, or educational materials that can describe a treatment or symptom. If the office does not provide these things, ask where you may find them. Perhaps you can reach out to one of the MS organizations to learn more about a particular treatment or symptom, or ask for information to be mailed to you.

By taking a more active role in your health care planning and decisions, you may feel more positive about the control you have over the disease.

How do you plan for your trip to the doctor or specialist?

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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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The Impact of MS on Everyday life

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:

MSIA children impact

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.

MSIA support system

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?

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