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CHANGES AT MSWORLD - MSWORLD'S CLOSURE

We began with a mission and purpose to help others living with MS.

We were excited to get going!

And hit a few bumps along the way…

However, in all seriousness, we remain grateful for our amazing volunteers, members & all who have made MSWorld a valuable resource for all!

July 10, 2024, we celebrated the goodness of these past 28 years. With a heavy heart, we will be ending our services.

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We thank all for your support.

MSWorld's website will close on October 16, 2024.

“I personally want to wish all of you the guidance to find this type of support, as so many do here. Also, my prayers and love extends beyond my understanding. It has been a pleasure to steward this journey.”

God Bless you, Kathleen

Kathleen Wilson
Founding President
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Not a relapse, but what?

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    Not a relapse, but what?

    Hi all,

    Not sure what to think. The last few weeks, I seem to get sleepy tired more. And when tired, my vision becomes slightly blurry, and noise and light sensitivity kicks in. Needless to say, my cognition is also affected.

    I have had this before and chalked it up to pseudo exacerbation, whether heat or fatigue relayed.

    But it is occurring more frequently and more urgently. If I am out and can't get home quick enough, nauseousness and dizziness kicks in.

    It is almost like I need to put my head down and sleep, no matter where I am.

    I had blood work 2 weeks ago and all normal. No change in sleep, Rx, diet, exercise, stress level,etc...

    I am used to MS fatigue and usually managed with Provigil, but this seems to have escalated to another level.

    Any thoughts? I see my neurologist mid-October for check up. Just not sure in the interim what to try.

    Thanks.
    Kathy
    DX 01/06, currently on Tysabri

    #2
    It isn't clear from your description whether your visual symptoms are part of an aura, but the sensitivity to light and sound and the nausea and dizziness are all common symptoms of migraine. it's important to note that migraine is a vasospastic chemical phenomenon that doesn't always include head pain. Migraine is not synonymous with headache.

    "Silent" migraines -- meaning without headache -- can include other migraine symptoms, including the light and sound sensitivity, visual effects, dizziness and nausea you're experiencing. Your neurologist should be able to evaluate your symptoms.

    In the meantime, you might try googling common migraine triggers and see if you can identify with any of them, then try avoiding them to see if it makes a difference. Stress and hormone levels aren't easy to influence or track, but they can be triggers. Even barometric pressure is said to be a migraine trigger. It will be helpful to start keeping a journal of symptoms and surrounding events to take to your neurologist.

    I hope your neurologist can help you find some answers and some relief.

    Comment


      #3
      I was going to suggest a migraine as well! Mine bring about all those symptoms and if I don't catch it quick enough, the nausea kicks in too.

      The only thing that will help me at that point is to go back to sleep for an hour or two.

      Mine are triggered by hormones and the barometric pressure falling. Not every time, but usually when I get them, one or two of those things are going on.

      Comment


        #4
        Thank you both jreagan and hsmalso. I don't have a history, but know they can start at any time in life. And since perimenopausal, I could be experiencing hormonal changes.

        I really appreciate your responses. It is as you said, only sleep alleviates it. I will start tracking food, drink, symptoms, sleep, etc. . It will help me when I review with my neurologist in a month.

        Thanks again.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Do you think you might be "just" really tired?

          I had a bad pseudo-exacerbation. Heat, noise, stress, headache caused legs to go stiff as a board.

          Ambulance, better get a medic alert pendant, etc hospital doctor gave me a script for steroids.

          Bless you Dr Chan , I'm keeping that script up my sleeve.

          Rest and water - and it all came good after a while.

          Sorry, I've been filling in my Disability Support Pension paperwork. Just when you think you're done, oops missed another thing.

          The other thing it could be is MS progression.

          Comment


            #6
            Thanks thinkimjob. Could be in a super tired state too, but wake up ok most times.

            I was supposed to have eye checkup anyway on 9/30, but they had to reschedule until late this month.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #7
              Saw both neurologist and opthalmologist this week.

              I have dry eye, but now severe, which is causing the blurriness and light sensitivity. So starting new medicine that will take a month to see if effective. The sleep alleviates it because the eyes are closed and getting some relief.

              As for the noise sensitivity, and dizziness and nauseousness, neurologist want to see if eye treatment helps. One possibility is that in trying to compensate for the vision, Working harder and escalating. I did also rate my fatigue level higher than last appt, so trying to get that under control.

              If not better with eye treatment, then will seek other causes.

              Just wanted to update in the event it helps anyone else.
              Kathy
              DX 01/06, currently on Tysabri

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