Describing MS and its symptoms – Community Feedback

Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

  • The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
  • They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
  • When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
  • It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
  • I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
  • I say I am doing unreasonably well.

It’s really difficult to get people to understand

  • It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
  • I don’t bother “describing MS & its symptoms” anymore.
  • I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
  • If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
  • My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
  • I don’t bother “describing MS & its symptoms” anymore.
  • When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
  • ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
  • Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
  • ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
  • I choose to not tell people that I’m sick.
  • I actually I have been accused of trying to be manipulative. It’s terrible.
  • There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
  • This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?


The MS Hug – Our community shares their experiences


MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!


Community Thoughts on Apologizing for MS

The impact of MS on a person’s every day life can be profound. There are good days, and then other days that are just downright terrible, for a whole host of reasons. One of the contributors at, Nicole Lemelle, wrote an absolutely touching story about one of her particularly bad MS days where she had embarrassing trouble with incontinence, and her husband stood by her side. She shared: He asked me “Are you alright?” Totally embarrassed, I shook my head yes and continued to softly cry. He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened. I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.” From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”

Nicole’s story struck a chord with our community, and so many people reached out to share their thoughts and stories with us. Here is what they had to say (and to read Nicole’s full article, click here.)

It’s hard to deal with bad MS days

  • Reading anything from Nicole usually makes me cry, and today is of no exception. I’m stuck in bed going on a month now with my latest “perfect storm”. Ear infections in both ears, a sinus infection, and the recent diagnosis of Mono is simply too much to handle right now. I also got the bad news that I’m too sick to fly to Florida and see my son graduate from high school. MS has taken so much from me that I don’t recognize myself anymore.
  • ‪I wish we MS people could all just get together and have a good cry sometimes.
  • I feel so out of place at times.
  • I can sadly relate to every word! I don’t remember what normal was like. I find myself often wondering what my life would have been like, if not for MS.
  • I’m saying a prayer for you. Your post made me cry, for you, for all of us. I’ve missed “normal” the past few years, but especially the past few months. It’s gotten very hard. I almost don’t remember what “normal” is, and maybe that’s a good thing.
  • I work a full time job and also have epilepsy (seizure free 10 years now). I have to do my shot on Friday night which, in turn, takes my Saturday away because I am sick. Not much of a life. Makes me so angry
  • I’m forever apologizing!
  • I feel like I have been put in a corner my family buzzing around me. I feel like a nonentity and like I shouldn’t be around
  • Thankfully my husband and now grown children understand completely. However my mom, who is staying with me for the next six weeks, just worries and does not understand if I take a nap that lasts until the next day. She fears something is wrong with me but won’t accept it MS that is wrong with me. My husband is away on business for the next three weeks causing me to do all the tasks at home. Cooking, cleaning, shopping. Things I could always do without a thought or care and now I struggle to complete and suffer after.
  • When I got my diagnosis last summer I cried on my husband’s chest as he hugged me. I have so much guilt of putting him through this life with this and that I may have given this to my kids. I miss me and I miss our lives before this. We were long distance cyclists, runners, skiers, scuba divers, horseback riders and now…?

I no longer apologize for my MS

  • I used to apologize all the time for being unable to do things and finally I woke up! I was at a family event and my mother was pushing me to do something I was unable to do and I apologized, and then suddenly it dawned on me, and I said NO, I do NOT apologize! I can’t do this and it’s NOT my fault, whether you want to believe it or not I’m ill and you shouldn’t even ask me to do it.
  • Reading your words made me feel more normal (what’s normal anyway?), made me sympathize, made me cry for myself and for anyone else with any nasty disease to deal with BUT your words made me realize that I don’t have to be SORRY for having MS.
  • I like everything you said about not apologizing. Right now I’m in the hospital and asking so many people to help do things at my house. I HATE IT!!! Someone is going to stay there. Meanwhile I have no clue what my body is doing this time. I’m scared I won’t return to how I was last week. I want someone to be there for me like your husband. Mine left years ago because I was no fun


  • I also have been struggling for 20+ years. I’m 47, and I feel exactly the same way every day but we are alive and on this earth if only just to comfort & support…be strong inside.
  • I have never felt the need to be normal, before my diagnosis and after. Normal is boring. I have always been different and always embraced it. As they say, “different stokes for different folks.
  • And I thought I was the only one with a husband that goes above and beyond! He’s always trying to fix things-it’s sweet, but every now and then I have to remind him I’m not fixable at the moment! He means well
  • Oh my God. This is my story as well, but it happened in the hallway on carpet. My husband didn’t bat an eye. It’s just carpet he said.
  • I don’t feel I need to apologize for not being able to do something.
  • After your initial diagnosis of MS there is no normal. I have learned to appreciate the good days and plow through the bad days. Reading what everyone writes helps me know I am not alone. God bless you all.
  • Sounds like my husband. I am totally blessed with a man who loves me despite this horrid disease
  • Please don’t be discouraged. Your life has become something different. It’s hard to imagine, but life has a strange way of presenting new realities sometimes. Your husband is an angel sent to help; I too have an angel and I am thankful every day.
  • I remember before 2006 I would go out have fun, dance. I don’t do any of that any more, especially at night. At around 3:00pm I start going down hill. If I’m up and out I try to be home around 3. Having MS truly changed my life. I have a truly wonderful caring husband who loves me unconditionally. GOD made that possible.
  • This IS normal! And it’s not like we camped out at MS headquarters to get a jump on anybody else so we could be first to get this great disease. Nobody knows why we get MS, but I’m pretty sure it’s not our fault. We do the best we can on any given day. And if wetting our pants is part of that day, then so it is. It’s messy, but how bad is that? I’m glad you have loving patient partner to help.
  • I have been re-reading this article over the last couple of weeks. It so touchingly addresses the fear and shame that underlies the diagnosis of MS I’ve been getting my head around since February. Always the strong person, the one who is leaned on, who am I if my strength is gone? Well, reading your words shifted that perspective. Your sharing of this shows your strength, the strength of your relationship and the guts to look at things in the eye. Thanks so much for sharing this.

What about you? Do you find yourself apologizing for your MS? Please share your thoughts with us!


The first “Ask Me Anything” on!


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, 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 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!


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”?


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, 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
  • 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.


  • 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!


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.


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).


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

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


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

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


The Impact of MS on Everyday life

Earlier this year, 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?


Disclosing MS at Work – Community Experience

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

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

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

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

I had to make adjustments due to my MS

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

I wish I hadn’t said anything

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

Sharing my MS diagnosis was a positive experience

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

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

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