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Readers Respond: How Do You Let Other People Know What It Feels Like to Have MS?

Responses: 194


Updated October 01, 2008

Now it's your turn to share with others any creative ways that you have come up with to communicate how you feel - really feel - living day-to-day with multiple sclerosis (MS). Send in your best ideas, try out some others, take some of the more innovative suggestions from here and adapt them. After all, if we can't communicate, life gets pretty lonely and people don't know how to help us...


I was diagnosed with MS 4 years ago. Went on Tysabri but the JC Virus appeared and I was taken off Tysabri. I start Gilenya next week. My issues are walking properly, tingles in hands, slurred speech poor writing. My biggest issue as a man is not being able to ejaculate or have an orgasm. I have no issues getting an erection but the rest is so frustrating for me and my wife. Unfortunatly nothing can be done to help
—Guest Robert

the heaviness

my body feels like it weights a ton, I am tierd most parts of the day. I can't deal with people who talk too fast, I can't read long texts. vertigo, omg I thought I was going to die, the nausea that came with it was also intense, every thing had to go out of my body. my left eye turnes from it's axe it would always look outside, the right eye would see double. there was white stains in my vision. as for the pain, it was like an electric choc that came suddenly then dissapeared right away, the kind of pain that makes you gasp, only in one leg thank god, the numbest one. I couldnt feel my skin for awhile, the lower body of my skin, my feet felt wet, and it was as if I was walking on sponge. well little things that can screw your life over. I'm tierd of this life style am 19 and I already have the health and stamnia of 90 year old.
—Guest lylia

Jersey girl

I totally agree with everything you said Kim. I have had Ms for 5 years now. I used to be a legal secretary. I cant type anymore. Not 70 wpm like I used to. My boyfriend left me (scumbag( and now I wake up every morning wondering what I won't be able to do anymore.
—Guest Angela

I no how everyone feels

Doctors are there to find out if you have ms.but they dont care about the rest.as there not going through what we are.thats the reason why i don't fill out the questionnaires any more.even my family thinks its a joke with me.they say every day there is something wrong with you,cant you wake up happy for once in your life
—Guest Amy

living in a jail

I was diagnosed in 2010 at age 24, It only took 10 years of me telling doctors about the symptoms. I am lucky enough to beable to still be independent but that's thanks to tysabri. I was in and out of wheel chairs and not driving and all that, but for now I'm good. I have noticed now people look at me like I'm lying cause don't act sick or when I do have a bad day they act like I'm trying to get out of doing things. I wish I knew how to explain to people this never goes away and that just because I look ok or act like nothing hurts or nothing seems wrong doesn't mean everything is great. I have a positive attitude about all this (well as much of one can have) and I tell myself I wont let ms beat me but for everyone out there who knows someone with it don't let them fool u when they say they're fine. cause if they r like me they aren't going to tell u they hurt or they are sad or they cant stand. we don't want pitty but we don't want u to completely forget we might need help too.


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—Guest http://gyxmvannrego.com/

MS Survivor

Inspite of living with the disease for 14 years, up and downs relapses and then maybe a year or 2 no symptoms. I STILL consider myself Bless. I offer this advice Push, Pass, Your Pain. Prayer, patience, and time in that order. We are going to have bad days and very bad days but we are stronget than we think.
—Guest Penny

Hung Over

I feel like everyday of my life is spent hungover. I don't drink. Nausea, exhausted, just feel sick. I feel like I'm made out of lead. Everything is so tiring. Shooting pain in feet and burning arms, legs and feet. Sometimes I don't want to live because it's so exhausting.
—Guest Lisellle

Leg pain

Today I can't pick up left leg. It just drags. I think I have lost my mind. I cry myself to sleep and wonder what I did to deserve this.
—Guest Becky T

Stay humble

I remember the day I lost vision in my eye and shortly after diagnosed by my neurologist with MS. Mind you I was 21 years old just starting out on a new journey now thinking my life was over. I went into a depressive state thinking I was going to suffer like my grandmother did with the disease. Yea my hands and feet may get numb and my memory isn't the best, but I fight everyday to stay afloat. Soon to be 24 years old, I am blessed to say that I am living a very normal life continuing to humble myself everyday because my condition can change in any minute.
—Guest Jasmine Mickens


Thank you all for helping me think that I am not crazy w/ms. Thank you for being so strong to post ur thoughts, symptoms & the way people treat you! U make me feel not alone! Thank you God, also thank you all for prayers! I pray for you & a cure of this monster disease called ms. God bless!
—Guest moo

Who Knows

I am 37 years old and was diagnosed with MS two years ago. I had so much energy prior to and felt invincible. I woke up one morning with what I thought was I strain; within a couple days I lost vision in my right eye and thought maybe I should go see a doctor. Sure enough within a couple days the diagnoses came. I find myself almost embarrassed because I have a huge amount of pride and I don't want anyone to think I can't do something. In all honesty, I struggle emotionally and physically everyday. I do not talk about it to even my family as I don't want them to worry, so I hold it all in. This is the first time I have actually spoke about it. Thanks for listening.
—Guest Brandy


I feel for every single person writing on here. I too was finally diagnosed with MS after years and years of tests,blood work,MRI's, x-rays- all to rule out everything else. All the while the MS got worse. I got no treatment because the dr was still trying to figure it out. Suffering thru this illness is only half of it. Trying to get help is the other. For all those that feel alone please know your not. We are brothers and sisters of this disease and we must continue to stay strong. I wish everyone all the best.
—Guest Sandi


I always spent my half an hour to read this blog posts Describe Multiple Sclerosis to Others - How Would You Describe MS? daily along with a mug of coffee.
—Guest Tiffany and Co Australia


The last 10 years I've had all different symptoms but no diagnosis. Everyone from family to friends to boyfriends would laugh and say I'm paranoid and a hypochondriac. Went from dr to dr to specialist to specialist. My period got terrible each month and thought to myself"OMG! Maybe my issue is hormonal since no other Dr will tell me or help me with what's wrong with me???! " 33 years old now. Have had symptoms since 21. My OBGYN found a lump and demanded a mammogram. Mamo found a tumor. My OBGYN went the extra mile and demanded an MRI. She was being extra careful and wanted to make sure i had no tumors on brain as well. Got results back. No tumor BUT 12 Lesions on brain and dr said possible MS. Sent to neuro for testings etc . Neuro says "Onset of MS" and how I was fortunate to find it in early stages to be able to go on meds right away. Every day is a struggle. Legs kill like I'm being stabbed 247. Knees feel like they've been locked up for years and then released and throbbing p
—Guest Dee
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