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Myasthenia Gravis Flare Up Summer 2011

Posted by Connie on Thursday, July 7th, 2011 at 11:24 pm and is filed under Autoimmune Disease, Chronic Illness, Prescription Medications.
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It’s time for a Myasthenia Gravis flare up of 2011 since it’s summer and the heat and humidity are horrible. I’ve been so thankful that the Myasthenia Gravis has been at bay for a long time with just some normal symptoms. I’ve been going through a stressful time since November of 2010 when my daughter first began having some serious health issues. I thought the stress and going back and forth to her school, to the emergency room and to doctors would have done me in, but except for the normal weakness, fatigue and droopy eyelid, I’ve been pretty good.

But the flare up hit me about two weeks ago. I thought it was just going to be a few days, but as it got worse, I knew it was time to see my neurologist. My symptoms were total body weakness, difficulty walking, swallowing and talking and extreme fatigue. I also started to get the shakes – that’s when my muscles twitch even when I’m resting. I couldn’t even drive. A new symptom I had this time around was coughing every time I ate.

My neurologist knew right away that I was in a bad flare up. The drive to see him wore me out and I wasn’t even driving. I could hardly sit up in the chair and looked like a rag doll. Now I know where that term comes from! (Myasthenia Gravis is sometimes called the rag doll disease.)

My strength wasn’t that bad, but that’s nothing new. I have more problems with stamina than strength, plus the Mestinon was just kicking in as he examined me. But I wasn’t able to maintain my seated position for long, my both eyes were drooping and I was short of breath. My doctor explained that the coughing while eating was a signal that my swallowing was getting worse.

He increased the Mestinon from 120 mgs every 3 hours to 150 mgs every other dose and the Cellcept from 2500 mgs every day to 3000 mgs every day. If my symptoms worsen, I am to call him or go to the ER. If I don’t see any relief in one month, I am to call him.

Do you have a Myasthenia Gravis flare up every summer like me?

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4 comments

  1. This is my first time to hear these kind of sickness. And I’m so thankful that you mention it here. I do hope and pray that you can recover soon and share more about this kind of sickness.
    Richard recently posted..Best way to win the lotteryMy Profile

    comment by Richard — July 20, 2011 @ 5:39 am
  2. My family had an eye infection , one after another. I was first, then my father and mother. Hope my little sys will be ok.
    Wish you fast recovery. And ask more than one doctor – in cases like that its usefull
    Luke recently posted..Why get a degreeMy Profile

    comment by Luke — July 25, 2011 @ 4:33 pm
  3. Your site is full of information on conditions that quite frankly I have never heard of yet are very serious. I wish you a fast recovery, hopefully your site can help shed some light on these conditions and further research on them.

    Jason Reeves
    Joint Health Specialist
    jason reeves recently posted..What to do about Joint PainMy Profile

    comment by jason reeves — October 3, 2011 @ 10:53 pm
  4. I’m 25 yrs old and I have rheumatoid arthritis, lupus and was diagnosed with myasthenia gravies in January 2008 I just started to get a flare up but,it’s winter I know the cold weather makes it worse but I didn’t think it was gonna be that bad!!

    comment by Daisy — January 13, 2013 @ 5:51 pm

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