Runaway MS Train

By: Matt Cavallo

I remember as if it were yesterday: January, 2007. I was sitting in my neurologist’s office after suffering my third relapse in eighteen months. At that moment, I felt that my MS was a runaway locomotive barreling down the tracks and I needed to somehow find the emergency brake.

My neurologist at the time was new to my case because my previous neurologist took a new position as a stroke specialist at a Boston hospital. I was in to see my new neurologist because I needed to switch medicines due to an allergy I had developed to interferon.

Prior to this visit, I had researched a breakthrough new treatment that had only been on the market for six months. This treatment had been voluntarily removed from the market due to unforeseen deaths during clinical trials and had just received FDA approval for a re-launch in the summer of 2006. Despite the risk associated with this treatment, it showed potential to be the emergency brake that I needed to stop the runaway MS train.

I took control of the conversation in my neurologist’s office right away, “Doctor, I have been reading online about the available options now that I can’t take interferon treatments. After comparing the two other options, I want to try Tysabri.”

There was a long, uncomfortable pause. Then he leaned forward and pushed his glasses up his nose towards his brow and said, “Matt, while I appreciate your research there is not enough published data on this new treatment. There were complications during clinical trials. I am not comfortable prescribing this treatment at this time. Not when there is a safe treatment option with a proven track record still available to you.”

I felt like I just took a gut punch and got my wind knocked out. I sat slumped for a minute in disbelief. He leaned back in his chair and continued, “I am going to write you a prescription.”

“Doctor,” I interrupted, “with all due respect, it is my body. I am in charge of what I put into it. This new treatment is showing great promise and I want to try it.”

“Well Matthew, I am not going to write you a script for it. You still have a platform option that may work equally well. Let’s start you on that.”

“Doctor, I am not going to start that treatment until I get a second opinion.”

Now, his demeanor changed. I could tell he wasn’t used to that kind of patient response. He recoiled, “Very well Matthew, if that is your decision I respect your wishes.”

With that, I left his office and after some more research, I found an MS specialist in Boston. I called her office and she said that she wanted to evaluate my case. I just needed a referral from my primary doctor to go and see her. So, I went to visit my primary care doctor and asked her for a referral.

“No,” snapped my primary doctor. “Our doctors, in our system on the South Shore are every bit as good as the ones in Boston.”

No? Why was everyone making this so hard on me? I didn’t understand what I had to do to get the treatment I wanted and was frustrated that everyone in the healthcare system was seemingly against me.

I called up the Boston MS Specialist again and broke the news that I couldn’t get a referral.

“Matt,” said the MS Specialist, “I am going to reach out to your primary doctor directly and ask for a one-time second opinion referral. Then, you are going to come in and see me and we will find you a new primary doctor that will refer you to me.”

This was eight years ago this month in February of 2007. That month, I started that new treatment and applied the emergency brake to my runaway MS train. This eight year anniversary also marked my decision to be my own healthcare advocate. It took a lot of courage to say no to the doctors, but in the end I felt like I took control of my own health. Today, I have great open relationships with my healthcare providers and we make decisions together as a team.

**Disclaimer**
The previous blog is the author’s real life experience and his personal treatment decision. This is not an advertisement for any particular treatment. What works for one person may not necessarily work for another person. Please consult with your doctor to decide as a team what treatment option works best for you.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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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
.
  • 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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Love Conquers All… (Including MS!)

By: Meagan Freeman

Valentine’s Day brings to mind images of unconditional love, commitment, and romance. We see the theme as we stroll through any store during the month of February, the candy hearts, the red roses, and the chocolate. Sometimes, we forget what this concept truly means, and get caught up in the “commercial” aspects of the holiday, instead. If anyone is looking for a true story of love, hope, inspiration, and unending devotion, I have one for you.

My grandparents met on a Southern California Beach in 1944. My grandmother wore a bright yellow bathing suit, as she sat in the sand under an umbrella. My grandfather always described her as “the most beautiful girl I have ever seen.” Both of my grandparents served in the military during World War II, and both were stationed in Santa Monica, CA. It was love at first sight, according to both of them. This bond grew in the following year, and they were married in a beautiful ceremony in 1945. This strong bond they had formed would be tested in the coming decades, and it would carry them through the most difficult times.

In the following decade or so, my grandparents had seven children, three girls and four boys. My mother was the oldest child. Sadly, my grandmother began to develop neurological symptoms such as weakness and emotional instability. Eventually, she experienced seizures on a regular basis. This led to a fairly rapid decline, leaving her wheelchair bound by age 40, and bedridden by age 45. Eventually, she was diagnosed with a rapidly progressive form of multiple sclerosis. The advice regarding MS in the 1950s-1960s was generally to “get in bed and stay there,” and “do not ever exercise.” As we know, this is some of the worst advice for MS patients.

When my grandfather was faced with the decision whether to move his beautiful wife to a nursing home or keep her in the family home, he insisted she remain with him. He lovingly cared for her for over a decade in the home, all while raising the seven children and working to support the family. He helped her to dress in her best clothes during family gatherings, brushed her hair, and made sure she was a part of the family in every way. My grandfather was a photographer, and he took hundreds of incredible family photos, always including my grandmother.

Eventually, my grandmother lost her battle with MS. My grandfather carried on for many more years, visiting the grandchildren (myself included,) gardening, attending church, and waiting for the day he would see his wife again. His faith was strong that he would see her again someday, and he spoke of her often. He passed away in 1994, and on their grave is the quote that sums up the undying dedication they showed for one another through the most difficult times life could throw at them: “Suffering disappears, love remains.”
Love is indeed forever.

meagan feb blogMy grandparents on their wedding day, 1945

 *Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Hard Family Conversations and MS

By: Matt Cavallo

During my initial hospital stay and subsequent diagnosis of MS, one of the biggest challenges that I faced was talking to my family. We had a history of multiple sclerosis in my family. My dad’s sister, Loretta, was diagnosed with MS in the 70’s and she passed away in 1981 due to complications of the disease. During that time, there was little in the way of treatment available to help her. Not only that, but the disease progressed very quickly. She passed when I was only four, but I still can remember her. She was in a wheelchair and she couldn’t talk, she could only mumble and moan.

While I was laying in my hospital bed contemplating my diagnosis, I was thinking that I shared the same fate as my Aunt Loretta. The whispers around my bed from my family members supported my fears. As a result of these fears, the conversations changed. Family members started treating me differently. They were walking on eggshells around me, careful not to divulge any of their true fears of my future. Even with treatment, as my functionality returned, everyone held their breath for MS to strike again.

Six months later I had another drastic exacerbation. Then, twelve months after that another one. It seemed like I was following Aunt Loretta down a perilous track. And my family treated me that way. It was to the point where I didn’t want to have conversations with them because I wanted them to remember the person I was and not the person I had become with MS.

However, there were a couple of things I had going for me that my aunt didn’t have. One was timing. In 2005 there was a lot more knowledge about the disease and many more treatment options available than when she had it in the 70s. The second thing was history. I knew my Aunt Loretta’s story and I didn’t want mine to end the same way. Family members told me that she didn’t like the advice she received from a doctor, so she never went back to that doctor. I used that information to motivate myself to learn as much as I could no matter if the news was good or bad, scary or hopeful. I just wanted to get the most objective, up-to-date information available to fight. Lastly, I had hope. In the seventies there was little known about the disease. Today, there is research and scientific breakthroughs, social support networks, and hope.

If I could go back in time with all I know today about living with multiple sclerosis, the fear and egg-shell conversations with my family would be dramatically different. I would use the resources around me, like My MS Journey, to educate myself and ease my family’s fears instead of staying silent.

Today my family conversations are no longer about the horrors of MS. My family and I now talk about my future and my kids and all of the awesome stuff that normal people talk to their family about. Today we are a normal family and I just happen to carry the torch of multiple sclerosis. I have had it for approaching ten years now and I am still working, playing, being a dad and living the life I always wanted to live. That makes me proud to talk about my MS journey and how I have lived a great life despite my diagnosis.

Resource:
http://mymsaa.org/journey/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

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When people say, “but you look so good!”

One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

  • I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
  • Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
  • While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
  • I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
  • I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
  • I just wish they could be in my body for one day!
  • That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
  • It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

  • My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

  • I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

  • MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good
.

I don’t mind if people tell me I look good

  • I don’t have a problem with people saying I look good. All I can say is thank you.
  • I still like to hear, “you look good,” even if it’s not true.
  • I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?

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New MSAA Guest Blogger

Meagan Freeman

I am thrilled to join the MSAA organization as a guest blogger, and I would like to introduce myself. My name is Meagan Freeman, and I am a licensed family nurse practitioner, blogger, MS patient and mom of 6 from Northern California.

I was diagnosed with RRMS in 2009, after experiencing dense numbness of my right torso. This was numbness like no other I had felt, like my torso was not even a part of my body. I was in the middle of my Bachelor’s program in Nursing, working as a full time ER nurse, and a mom of 6 at this time. The diagnosis was devastating, and demotivating. Quitting school was something that I thought about almost immediately, and over and over for months. I tried to ignore those demotivating voices in my head. The ones that say, “you should just stop now. What is the point? Take the easy road, forget it.” I was halfway through my Bachelor’s program, should I quit? I was just going to end up in a wheelchair. Bedridden. Nonverbal. Just like my grandmother. What was the use of finishing school? What was the use of doing ANYTHING now? Images of my grandmother raced through my mind. My maternal grandmother was incapacitated in my memory, due to a long battle with progressive MS. These images were terrifying to me, and I pictured myself in that same state.I thought about quitting school many times, but fortunately I continued.

I finished by Bachelor’s degree in 2010, and began my Masters in Nursing/Family Nurse Practitioner program that fall. It was the greatest challenge I had faced since diagnosis, and I would not be allowed to take “short cuts” because of my MS. This was the first time in my life that I realized that my disease would not grant me any free passes. I would have to achieve and complete this program purely on my own, despite any illness.

An important lesson I learned during the 3 years of higher education I pursued as an MS patient was that we are capable of self -defeat. It would be so much easier to quit, right? On those difficult, painful, fatigue ridden days? It is so tempting to give in and take the easy road, and many people succumb to this path. It doesn’t require MS, either; many individuals find any excuse to give up and take the easy road. You must find that voice that encourages rather than discourages. Find that voice that will carry you through those days. Nothing worth doing is ever easy, so make the choice to be the hero of your own story. You have the ability, now you just need the psychological strength.

On my graduation day, in May of 2012, there was light. Spring, warmth, and brightly colored flowers surrounded me like a renewal, out of the cold winter and into the sun. Every detail of that day is frozen in my memory, never to be erased. The smell of the freshly cut grass, the slow march into the ceremony, the smiles. Like a wedding or the birth of a new baby, this was a day that would live in my mind for the rest of my life, though there was a sense of disappointment along with the accomplishment. There was a pre-graduation let down, and I knew that with the completion of this goal, I would need another. Yes, this was a successful endeavor, but what would be next? For now, I could not focus on anything but that moment. This was a day to spend celebrating, laughing, and feeling a sense of pure joy and relief. Why trouble myself with the future today? Today was a day just to be present.

After graduation, I began to practice in a primary care office as a nurse practitioner. I saw many patients during my day, managing chronic illnesses and performing physicals. I experienced the irony of being both a healer as well as a patient, and some days were not easy. I also began to write more frequently, which was always my lifelong passion. I started to blog, and it was incredibly therapeutic to get feelings down on paper. Today, I have the opportunity to blog weekly on my website, and guest blog for several wonderful organizations. I am happy to be able to pursue these things, and with the support of my husband and family, I hope to continue for many years to come.

Being the “hero” of your own story is the theme of most of my writing today, and I encourage every MS patient to think of life as a story that will someday be told. You have the power to make that story whatever you want it to be, so make it incredible, powerful, and positive. Make that story one that will inspire generations to come. You have the power to achieve anything and everything, regardless of a multiple sclerosis diagnosis.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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From Junk Food Junkie to Health Food Nut: My New Year’s Resolution

By: Jeri Burtchell

Happy New Year! I don’t know about you, but I’m starting fresh, determined to make this year better than the one before.

I try not to make unrealistic promises to myself in January since I’m not so “resolute” when it comes to my resolutions. Instead, I set the bar low so I can cross it–even if I have to trip and fall to make it over.

This year I chose only one goal: to eat better. I figured if I can do that, maybe there will be side benefits like losing weight or feeling better.

I confess I’ve been a junk foodie in the past. I use air quotes when I say the word “food” as some people would beg to differ. Yes, I’ve eaten leftover french fries from the bottom of a McDonalds bag a day later. Am I ashamed of that? You bet.

It’s hard to be a freelance writer covering MS and ignore my own bad habits. The latest news regarding the gut microbiome and how it can influence a whole host of diseases has been in the news and on the internet so much I can’t help but feel guilty hoisting a Coke to my lips as I look on and take it all in. Maybe there’s no definitive proof that diet influences MS, but if I can control what goes in my mouth on the off chance I might feel better, don’t I have an obligation to do that?

So enough was enough. I slurped up the rest of my Wendys frosty and pledged to tighten up my definition of food. I mentally stationed a miniature bouncer at the corner of my mouth who only lets the good foods pass.

I wish this bouncer had a wallet full of cash, though. My first stop after I (loosely) defined my resolution was the grocery store. Who knew eating only organic whole foods and raw honey or cold-pressed virgin coconut oil was only a pastime the rich and famous could afford?

The upside to taking out another mortgage in order to eat right is that you are hyper-aware of expiration dates and the gradual decomposition of your quality fruits and veggies. If I wanted everything to turn to compost in the vegetable drawer I would have cut out the middleman and simply buried my hard earned dollars in the back yard.

Not everyone in the house is on this health food bandwagon, however.

My teenager hates vegetables and my 91 year old mother is set in her routine, and she’s in great shape. “She’s earned the right to eat what she likes,” said her doctor, and I swear I saw Mom stick her tongue out at me.

Even though this is my resolution, I’ve found myself asking “every day??” when I think about how often a person is supposed to eat like this. For a terrible cook (another confession), eating things that aren’t ready to “microwave and enjoy” has been a huge challenge.

So I started out with something easy. We all like shakes, and smoothies are like shakes, right?

I got out the old Hamilton-Beach blender and blew the dust off. I looked at all the fancy stuff I’d bought at the grocery store and began flinging in a handful of this, a spoonful of that. I topped it all off with a generous heap of kale (because you can’t toss an Oreo cookie without hitting a story about how good kale is for you), and I set the blender spinning.

It looked…disgusting! The green of the kale, combined with the red of the strawberries gave the concoction an overall brown color. Even though it looked kind of like a chocolate shake, my teenager wrinkled his nose, well aware there had been no chocolate involved in the making of his mom’s new drink.

Ignoring my own urge to pinch my nose closed before gulping it down, I sipped mine and smiled, nodding to him to give his a try.

It turns out we both loved it so much it has become our daily ritual–and the uglier the better. We throw every healthy thing we can find in there.

Besides the smoothies, I cut out processed foods, refined sugar, and carbs. I have no clue how–or if–it affects my MS, but I can tell you this: in the 22 days since I began, I’ve lost 5 lbs., I don’t need afternoon naps, and my brain fog seems to be lifting.

I can’t wait to see how I feel a month from now. Unlike past resolutions, I think I just might be able to keep this one!

*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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How Small Changes Can Make a Big Difference in the New Year

By: Matt Cavallo

While most people are planning for their New Year’s resolutions, many of us with multiple sclerosis are just trying to feel normal again after all the holiday activities. The problem with the holidays is that they take us out of our normal routines and create financial and emotional stress. When we go outside of our normal routine or have increased stress, we unknowingly put ourselves at risk for an MS exacerbation, or relapse.

Last year I blogged, “Tips for Avoiding a Post-Holiday Multiple Sclerosis Flare”, which can be read by clicking here. Those tips include: developing a financial plan, changing eating habits, exercising, getting back on your schedule and setting attainable goals. You can enjoy the holidays, but it is critical to have a plan to get back on track.

Most times my tips come from lessons I’ve learned the hard way. Instead of taking my own advice last year I tried to be super dad and ran myself ragged. I spent the next couple of months trying to recover from the MS fatigue, was unable to take off the extra holiday weight and had to buy new pants with a stretchy waist band.

You see, you don’t have to wait until the New Year for a do-over. Resolutions can start at any time. Mine was to ditch the stretchy pants. I made sure to start working towards it before the holiday season began. I also made a couple of smart decisions along the way.

I took extra time off to make sure that I wasn’t stressed with last minute running around. Taking care of the gifts ahead of time also softened the financial stress of the season, because the costs were spread out. We didn’t stray too much from our regular diet, but did allow some holiday goodies. I also made sure to take extra time to rest. Taking the time off to spend with my family allowed me to be super dad and catch up on rest.

With all of the planning I did ahead of time, I am much less stressed and fatigued than last year. I am also down a couple of pounds and can ditch the stretchy pants. I’m still not exactly where I want to be yet, but I am working on it. A pleasant side effect of implementing a resolution before the New Year is that I actually believe that I have some attainable goals that I can stick to.

What I learned is that I don’t need a holiday to commit to feeling better. I cannot control what MS does to me, but I can control other things like fitting into my pants. Making small changes can have a big impact on how you feel or how fatigued you are. What little changes are you going to make in 2015?

Thank you for your continued readership and support. Wishing you and yours a happy, healthy New Year!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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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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