What I Wish...

MS symptoms vary from person to person. Even more, symptoms are often invisible. Because of this, it can be difficult to describe your symptoms or get someone to relate to your experience.

For MS Awareness Week (March 11-17), we asked you, “what do you wish people knew about MS?” Here’s what you said.

1) MS can feel like a burden.

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2) It’s often on the back of your mind.

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3) The over-looked cognitive challenges with MS.

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4) The fear of disease progression.
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5) The effort it can take to just get through the day.

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6) The disease is unpredictable.

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7) Because MS affects your nervous system, symptoms can be wide and varied.

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8) Taking care of yourself mentally is a big part of living with this disease.

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 9) Just because you can’t see the symptoms doesn’t mean they're not there.

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10) MS can affect the people around you.

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11) People living with MS are resilient.

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12) Life does not end because of MS.

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We want to know: what do you wish people knew about MS? Do you agree with any of the thoughts above?
Tags Healthy Living, Symptoms      2 Appreciate this
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The National MS Society

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    4 Comments

  • DebraGale7  Apr 9, 2018 1:52 AM
    I was diagnosed by testing and the MRI found lesions on my brain, white matter is perpendicular in spots, with increased T2 signal. I was abused terribly for 20 plus years, and I escaped and survived. I worked in offices, held good jobs, and he took my money using horrible threats and beatings for control. I am also diagnosed with, and am treated for: Fibromyalgia, chronic stress (untreated) COPD, Degenerative joint disease, multiple sclerosis, hypertension, severe headache, scoliosis, anemia, GI Bleed requiring transfusions, that may resolve with hiatal hernia repair. cardiac: narrowed valves, heart murmur, hypothyroidism, osteoarthritis, chronic sinusitis, severe cervical and back issues due to damage and degeneration, horrific restless leg syndrome, they aren't just restless, I tingle, itch, and kick terribly. The worst MS symptom so far is a black floater in my left eye, and "zaps" which originate in my brain, and I hear a sound like a 444 rifle being discharged near my ear accompanied by a tremendous "shock" that is just that, a feeling like I have grabbed a 110 volt line, or, stepped on one, depending upon which limb reacts to the shock. I awaken, say my prayers and do what I can. I have also had a total of 6 stroke like episodes, including loss of motor control, slurry speech, and no balance since 1997, the last was win December 2017. I have no spouse, no family to turn to except my children, and I do not know how I am going to pay a neurologist. May God help us all. I've lived by the motto that no matter how hard life knocks me down, I will stand back up. Because I am a chronic pain patient, I'm running into much prejudice. One ibuprofen, or ANY nsaid med causes me to bleed internally and require transfused blood. I've been strongly warned to never, ever take another Nsaid. I've always been told that for me specifically, the pain meds I take serve me well, have for 25 years, and to continue them and them only. I also took 3 10mg valium per day and that was taken from me by people on a mission All I can say was they were taken in 3/2016. I have slept no more than 2 hours per night since then, and then I will be up 40 or so hours before sleeping again. I get one 2mg pill per day now. I'm an avid researcher. I have read prolifically since three years old, and still do. My vision blurs at times, but glasses help. I love animals, the water, flowers, bird watching, and am an amateur astronomer. I love God, life and other people. I feel great empathy for anyone who suffers. I can relate. After the divorce from the bone breaker, I've been in two accidents that left me with 30 new fractures. Very little has kept me down, so far. May anyone who reads this know that I deeply appreciate it. I've had no one to even talk about MS with. I really need to talk now, and get some answers. My hopes to all for a pain less week, and many blessings. Sincerely, DebraGale.
  • DebraGale7  Apr 9, 2018 2:02 AM
    I have read other comments. Each one, in some way has happened to me, especially the not knowing what function will be diminished, amplified, or gone after I get my 2 hours of sleep. An inconvenience is also how I've viewed this. I fear now that it is far more than that, but I will live with it, and try my very hardest until my last breath at age 110, ( I hope)
  • ameto   Apr 9, 2018 6:15 AM
    The below account seems to reflects what I think a lot of people are also saying:

    "So from a patient's perspective fatigue hinders their enjoyment of life RIGHT NOW. Only recently I was having a conversation with a patient who said, "I know this might sound strange to you Mario. But I’m kind of at peace with ending up in a wheelchair. At least I will be mobile, visit friends, go out for dinner or to a concert even! This individual then goes on to describe how constantly ‘tired’ they always were.“I just can’t do anything. Even worse, I don’t want to do anything anymore! I have no energy”. In this regard, patients appear to care more about feeling better than the getting better aspect." Full article https://www.linkedin.com/pulse/meeting-ms-patients-point-unmet-health-needs-dr-mario-weiss/
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    Debisblessed  Apr 11, 2018 9:41 PM
    Hi Debra, I’m truly sorry for everything you went through in your past and what you still are going through. It seems as if your a strong believer in God which is a really good thing. No matter what the situatio, have faith and no it will get better because you are a brave girl after all you been threw. I’m here if you ever need to talk or need a shoulder to cry on. Many blessing
    Debbie