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    • #18571
      Jodi Enders
      Keymaster

      What symptoms or side effects of Myasthenia gravis and MG treatments intrude on your typical day the most?

    • #18586
      Kelley
      Participant

      My vocal cords are keenly affected by MG. Talking is often difficult. I’m always hoarse to some degree and often need to whisper. Mestinon helps during the first 2 hours after taking it. But should I try to produce any volume, my vocal cords will freeze for a second or two, causing me to choke. My right vocal cord is partially closed all the time and I am conscious of it all the time. My muscles weaken with use; but I have learned how to manage them and have to rest most of the day. I am very lucky in that after getting MG controlled after my initial diagnosis; I had 16 years of minor symptoms before a dramatic return which has disabled me. I subscribe to spoon theory and make sure I don’t over tax myself. That alone can be intrusive. But worrying about vocal cord paralysis is the most intrusive.

    • #18591
      Patricia DeMore
      Participant

      Some days I can only manage 1 energy event a day. So, I choose- is this the day I go to Trader Joe’s or Costco to shop? Or is it the day I go to the pool for some water movement exercise. Or can I putter in my garden and do some planting or cleanup. If I feel enough energy somedays I can do more than 1 event.  But mostly my tired legs/body will only take me traveling so far. I am not as active as I have been in the past which has been a difficult adjustment. I really have to think about energy expense and whether the activity is one I can push myself through. And I have an occasional “recliner potato” day when I just kind of crash and rest most of the day reading or watching videos.  So, yes, MG does intrude in my day.

    • #18604
      Ronald E. Clever
      Participant

      I am still working but plan on going out on disability June 1.  I start out the day by driving 75 miles to my office.  I then plan what I need to get accomplished that day since I can only do so much since I have to have the energy to drive home in the evening.  By the time I get home in the evening I am exhausted and can barely stay awake to eat dinner, I get out of breath just walking from my car into the office and stay in my office most of the day.  I work with some wonderful ladies that make sure I have all I need when they go to lunch or down to the kitchen.

      On a personal level one of the activities that wears me out is taking a shower.  I am over 400lbs so that along with the MG exhausts me so I manage one maybe two complete showers per week.  I do manage a PTA bath on alternate days but luckily I have an office job and an office by myself so I hardly ever sweat. I have a good friend at work that checks me to make sure I am not letting it go too long and so far she has never had to tell me.   I have had to add more time to my morning routine since I cannot wake up and be ready in 45 mins.  I leave the house about 6:15am so I am usually up by 4:30am – 5:00am.  This has cut into my sleep time but it is necessary.  I am hoping that once I have quit working I can concentrate on my health more and drop some weight.

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