A Short Fuse with MS – Community Feedback


Tick, tick, tick…boom! That’s the sound of explosive “word vomit,” the result of a broken brain filter, the final moments of a shortening fuse. Many MS-ers have experienced this 0-60 build of anger in situations that would normally cause little concern. So, our fabulous contributor, Lisa Emrich, decided to do a little digging and see if this shortening fuse was actually linked to MS. Her article was a hit! While the research data may not be clear-cut, the community’s reaction certainly was:

This is so me!

  • THIS IS ME!!! I have a very short fuse and very little “filter” on what I say when I “blow.” I don’t mean to act like that and it upsets me when I lose it, but I can’t seem to stop it either.
  • This is me, too. I’m a really nice, caring person but…with a really short fuse. I also tend to speak without thinking, which has gotten me in trouble.
  • I’m the same way! And I don’t mean to be. I have never been like this before and when I say “it’s the MS” I get the “yeah, right” look from some people.

It’s worse when I multitask.

  • I find that when there is too much going on around me I cant keep up, and it is so aggravating!
  • If I’m doing just one thing and then end up having to multitask AND answer questions or listen to someone talk, I break down.
  • My fuse goes when there are multiple people/activities demanding my attention. I’ve discovered that I can only focus on one thing at one time. When that one thing is taken care of, then I can usually move to the next thing.

Sometimes I just want to scream “Shut up!”

  • As soon as it starts I try to tell people to stop and hush for a bit, but they don’t understand, or they roll their eyes, or they keep talking,. Then they comment on how they AREN’T talking. My point is, there is never silence, and sometimes, I need silence.
  • The fact that people in the office feel the need to yell because they don’t seem to have inside voices just makes it that much worse.
  • Some people just know how to push the hell out of my buttons!!!

My poor family gets the brunt of it.

  • The only way for me to deal with it is to declare to my three teens “I’m way off my A game today, so please bear with me.”
  • I am so frustrated, and it is ruining my relationships with people, especially my poor child!
  • I’ve found that too many demands for my attention at one time creates a very unlovable person—my family puts up with a lot.
  • I hate it. It requires, love, patience, and understanding from the spouse!

I’m not me; this isn’t who I am.

  • I have done a complete 180 since my diagnosis in 99. I used to have a REALLY long fuse, but I’ve started snapping more and becoming more passive-aggressive.
  • I don’t even know who I am anymore!? It’s so hard.
  • I can blow up in a second if things aren’t the way they’re suppose to be, and that’s not me!
  • I never had this issue before. Now I tell people that “my bitch switch has a hair trigger.”

Does this sound familiar? Have you experienced an inexplicably short temper? Share your experience with us!


Community Thoughts on Missing the Way Things Were

For people living with multiple sclerosis, it’s easy to dream of the life we had prior to being afflicted with this condition. So much of our everyday lives is shaped by MS, we often find ourselves missing the way things were. One of the amazing contributors at MultipleSclerosis.net, Marc Stecker (also known as the Wheelchair Kamikaze), wrote a poignant piece on missing his former self, called “I Miss Me”. We shared his article on our Facebook page and received a tremendous amount of feedback from our community about what it’s like to miss the “old you”. Here is what some of our community members had to say:

I’ve said the same thing to others!

  • Funny, I said that to my neurologist shortly after I was diagnosed last year.
  • I just said something similar to my sweetie the other day…that I would like to have my life back. I feel as though it’s been taken from me.

I thought I was the only one!

  • And I just thought it was me.
  • I really miss me!!!!!! I didn’t know there were others who felt this!
  • I despise that I “miss me” BUT am relieved that I’m not the only one “Missing”.
  • I always have moments of missing the old me. Glad it’s not only me thinking this way.
  • I say this so much, but when I try to put things on my page or try and explain how hurts, even my family ignores it. I was glad to see this and know I’m not alone. I say to myself every day I miss me.

I Miss Me too!

  • I miss me a lot!!
  • What a well-written blog which perfectly describes the life so many of us live. Or should I say have lived. I am amongst the very elderly whose future time on this earth will be very short. You too, will adjust constantly to your new normal.
  • I mourn and miss the old me. I can’t believe who I’ve become; however it’s a new challenge and who knows what I can be and what new experiences lie ahead that I would never have had. Stay positive guys.
  • I shared with a friend recently, “I miss me, who I used to be.” Her reply… “No, now that person is still down in there somewhere.” I’m exasperated. People really don’t know!!!
  • I just want the old me back!
  • Wow! This is the first time a tag line has smacked me in the face! Even though I’ve been very lucky, as I pondered this “I Miss Me,” I suddenly felt very sad. I do miss me. Even though I haven’t been “obviously” affected by MS, there are so many hidden things, the fatigue, weakness, ability to think quickly, balance, and stamina, that yes, I am not the “me” I once was. I do miss ME. Thank you for a great article.
  • What I miss about the old me is being able to do ANYTHING I wanted to do, when I wanted to do it!! Now, I have to accept the help of others, where I was the one always volunteering my abilities to those in need.
  • ‪I do miss most of the old me!!!! But I have welcomed most of the new me, with very few regrets.
  • I was missing for 15 years. I felt myself slowly slipping away, more and more the last 5 years though. It’s awful.
  • I understand just how you feel. I miss dancing a lot! Stay strong
  • I miss myself so much! I just want to be able to be normal again and go to a ball game and climb up the bleachers and just walk around the yard without tripping in a hole and fix a meal or brownies without getting exhausted!
  • I miss me! I miss being able to bounce out of bed, being able to run, to dance to skip/hop/jump whatever! . I miss the reality of being able to chase my dreams. I miss me.
  • I have to believe that everyone misses the earlier version of himself or herself as they age, too.
  • Thank you for sharing. I say this a lot. I miss what I used to be able to do and can’t. I don’t even know who “me” is anymore. My identity was through my work and my child and all the things I could do for others and now I often wonder, “who am I?”
  • I am beginning to hate the new me!!!
  • I get so depressed if I start to think about original me.
  • I miss me like crazy!!!!! I say that to myself EVERYDAY
  • I want to run, even though I was not a runner!
  • I read his blog, it’s so insightful. My every move is fraught with thought. I miss the “me” that was.
  • Great article! It’s depressing to think about what MS stole from me but I know there are others who have it worse than I do and I try to stay positive. Keep writing it helps to know I am not alone.
  • I want me back, but I don’t see that happening.
  • Just learning to accept there is a new me but so hard to let go of the old me.
  • Things that seemed so simple are now a struggle. Thanks MS–NOT!
  • I miss being me. Feeling like I can do anything. I miss having a job, and making money.
  • Wow, this is so powerful! I miss me and have been missing me for 16 years now! I don’t know how many times I say I want my OLD life back!

What about you? Do you miss a previous version of yourself? Please share with us in the comments!


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!


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

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.


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.


A Special Report on Oral Treatments for MS

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.


How do you treat your MS?

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


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


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

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

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

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

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