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MS can get just plain weird sometimes. Help others understand by taking our In America Survey.

Life with MS can be unpredictable and downright odd from day to day, due to the wide variety and severity of symptoms.

MS is often referred to as an invisible illness because of the symptoms you can’t see like fatigue, sensory overload, the MS hug, intense itching, pain, and other unusual sensations.

All of these and more can be frustrating to experience, let alone try to explain to someone.

Help us better understand and explain the true impact of MS by taking our survey.

Take our survey here:

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  1. MS is challenging. Most people can’t see that we deal with bowel and bladder issues. They can’t see our pain underneath our smile. They can’t see how fatigued we are because we keep going. They can’t see the new mbness & tingling in hands and feet.

    1. This is so true, . I glad you found this community because you have a huge group of people here who do get it. Thinking of you and wishing you the best. - Lori (Team Member)

    2. They can't often see our mental anguish either, and if they do, it can be misinterpreted--judgements often overide empathy. Anxiety, depression, worry, fear...the list is long. Best, Debbie (Team Member)

  2. On this survey, it asked me what type of Multiple Sclerosis I've been diagnosed with & not one of the choices provided were my diagnosis. I've been diagnosed with Progressive Relapsing Multiple Sclerosis.

    1. Hi ! I just found this article from the National MS Society that says Progressive Relapsing MS has now been relabeled as Primary Progressive MS. So that would be the type you would choose for the survey. Here is a link in case you are interested: I learned something new today! Thanks again! - Lori (Team Member)

  3. Thx so much, Lori💝

    1. During conversations I find myself saying every so often, "there was a time"....
      In this case, there was a time when I didn't dislike people as much as I do now. Most people can not be trusted 100%. Most people have a phony side. Most people are not loyal. Most people are not REALLY understanding or compassionate. That goes for people we are related to and people who we know as "friends", neighbors.
      NO ONE understands the challenges and the misery of Multiple Sclerosis. It is indeed for many, invisible. No one see's the PAIN, the numbness, the tingling, the tinnitus, the eye problems, bowel and bladder problems, weak for a few days, strong for a few days, energy one day, totally weak the next, depression, the frustration.
      My neighbor glancing at me with a look of ....I don't know...distaste, thinking I must be a lazy person who couldn't care less about what my front yard looks like because nearly a month ago I went outside, started clipping the hedge on my front fence and had to STOP, walk away, go back in the house and remain there for the next three weeks because I suddenly got very weak, felt like I hadn't slept for a month and fatigue quickly set in and I was stuck in my house for nearly three weeks before being able to go back outside and do something useful.

      I hear people say every so often, "I wouldn't wish my pain on anyone..."
      Well, I'm here to say, I WOULD!
      I definitely would like to have people who are ignorant and judgmental suffer what I go through every single day of the year. Not just with MS, but throw in my arthritis, compression fractures in my spine and IBS. Then, get outside and do what I do at 75....shovel snow, use a big heavy snowblower, climb a ladder, clean gutters, mow the lawn, clip, cut and plant. I certainly don't do these things very quickly anymore and sometimes they don't get done all at once but I make an effort. I think I'll have a t-shirt made up that says, "EITHER HELP OUT OR SHUT UP!!"

      1. What a great idea for a t-shirt, . That pretty much says it all. I wish you had more support and compassion in your life. No one has a right to judge you, especially if they can't even be bothered to approach you and ask whether you might need help. Please know we are here for you whenever you need support or a place to vent. Thinking of you. - Lori (Team Member)

      2. Hey, Friend!💘 I totally understand how you feel! I'm not as old as you are. I'm 41..but I have MS.. for 9 years now. I ,too get weak with fatigue. 🤨 I have 3 young children. Some days it's not bad. Others, this MONSTER knocks me FLAT of strength. Drains me!
        I like your Tshirt idea!😂 So Funny & TRUE Another MS'r on here(Lizzy) ordered a t-shirt I agree with: I'm not faking being ill
        I'm faking being well!😁 How perfect is THAT?!👍. I do hope your neighbor gets over herself and learns to deal more kindly with you.❤️ Wish we were neighbors.😘

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