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    • #16959
      Jodi Enders
      Keymaster

      Last year, my boyfriend and I went to a restaurant months after quarantining for my health. It was a spacious place that I felt comfortable at, and it had been months since I turned 21 and had been unable even to order a drink.

      After one margarita, I got up to go to the restroom, feeling and walking fine, and then halfways there at the entrance of the restaurant, I blackout for a moment and fall to the floor. I haven’t and do not plan on taking even a sip of liquor anytime soon!

      I was on high doses of prednisone, mycophenolate, and pyridostigmine. It was only around three months after my first MG crisis that led to a diagnosis.

      I am curious, have you had complications with alcohol consumption? Do you believe this was due to your MG complications? What was your treatment plan when you couldn’t handle alcohol?

    • #16975
      FrancisW
      Participant

      Alcohol is a definite problem. Any amount beyond a sip causes my MG symptoms to immediately appear. Recently, I have turned to trying some alcohol free beer. Not a fan yet, because pre MG my preference was always wine. Oh well.

      • #18142
        paul spychalski
        Participant

        1 drink might be ok, 2 might be too many. It might have happened if you were having an MG Crisis. This is from a MD site:

        Myasthenic Crisis Symptoms
        A myasthenic crisis may come on slowly or very quickly. Difficult or labored breathing is the main symptom. You may notice that your breaths are shallow or your muscles seem too weak to move air in and out as you try to breathe.

        Other possible symptoms:

        Saliva builds up in your throat.
        You can’t swallow.
        Jaw or tongue weakness.
        Nasal tone to your voice.<<<<<<<<<< ( I had this happen and didn’t know what was happening.)
        Your airways feel blocked

        • #19175
          paul spychalski
          Participant

          The Nasal tone to your voice is scarry, that happened 3 times to me. When it happens my wife helps me to bed, after a short nap, it’s like nothing happened. I’m wondering if an MG crisis comes on if you have 1 or 2 drinks and are tired???

           

    • #16987
      John Gore
      Participant

      In the last few months I’ve noticed that just a few sips of beer or wine makes my breathing labored.  Breathing returning to normal after about 15 minutes.  Currently have just ocular MG taking pyridostigmine.  Needless to say, no more beer for me!

      • #18155
        paul spychalski
        Participant

        I drink O’Doul’s at times because it is only 0.4 percent Alchohol and tastes good. I have all the MG problems and that helps.

    • #16991
      Amy Cessina
      Participant

      I have a drink from time to time. Just white wines, or Prosecco no hard liquor. I’m not sure about the MG symptoms because the dizzy hits me first. I use those smaller cordial glasses so no one can pour me a huge glass. Saves the explaining.

    • #16996
      Thomas Lee Clark
      Participant

      <b>I do not drink alcohol. I come from a long family line of alcoholics but I love the taste and smell of beer. Bud now has a zero which is better than anything I have tried. </b>

    • #17010
      Carol Youngman
      Participant

      I had the same reaction with one glass of wine. At first thought it was a fluke but after the second time, when I felt like the wicked witch melting gave up the spirits.

    • #17039
      ChrisM
      Participant

      I like the occasional glass of wine but need to keep it to that, and can feel a definite difference the next day.  So moderation but not total abstinence.

    • #17053
      Marvin Yudenfreund
      Participant

      MS is a snowflake disease.  I have a 12 oz homebrewed beer every night, a glass or two of wine with a celebratory dinner, and a shot of tequila or Scotch on occasion.  The only problem I’ve had was a bit of insomnia after a couple of glasses of wine.

    • #17074
      Rick Federmann
      Participant

      When I was on Pyridostigmine (Mestinon), even a few ounces of light beer resulted in total lay-on-the-floor, can’t-speak exhaustion.

      Now I am on Mycophenolate (CellCept) and I can tolerate a glass of wine.

       

    • #17076
      FrancisW
      Participant

      Interesting.  Thanks  for sharing.  Do you also take Prednisone ?   Presently,  I am not.

    • #17112
      John Ulfelder
      Participant

      Since I was hospitalized for the onset of my MG in March, 2021, I have not had anything alcoholic to drink. Currently I am taking both mestinon and prednisone for my MG. Although I was a regular drinker before MG (beer, wine and liquor) I  have no desire for alcohol at the moment and based on the comments I am reading I should stay away from it!

    • #17171
      KATHY Lopez
      Participant

      I don’t drink much, however occasionally a glass of wine or margarita when we go to dinner. I was diagnosed 11/2019 and on MESTINON. Approximately 6m ago after having one glass of wine 5oz? I went to restroom and halfway there out of breath, walking off balanced like I had 10 drinks, face and neck flushed. My son said it was like I had Asian Flush, but I’m Caucasian   After several times thinking it was just a quirk, I now know for whatever reason I can no longer drink alcohol .  I was never a huge drinker in my later years, but just one other thing that’s eliminated

       

       

    • #17198
      Bill Wheeler
      Participant

      I have been on meds for 13 months, Pred [10 mg] and Mestonin[60mg] I can tolerate a wine or two but my eye muscles “jump” within minutes of drinking a glass and occasionally my sight clarity is slower to respond for just a few minutes. As I have a strict disciplinary wife regarding my behavior, I am careful about my consumption. I am limited to one glass on occasion and that works for me. Beer does the same thing but a bit slower to react. I find that NA beers replace alcohol and I like Clausthaller Dried Hop, Becks and St. Pauli Girl. Also drink NA wine. Avoids problems!

    • #17632
      Sue
      Participant

      I have not had issues with alcohol other than flushed face. I am taking imuran, predinsone and pyridostigmine.

    • #17641
      Jennie Morris
      Participant

      Mestinon with alcohol causes me to have flushed face and neck but also gives me a terrible metallic taste. Not worth the trouble. I get occasional muscle twitches and weakness but I’ve only had 3 drinks in 10 years – coinciding with the few times I was able to stop Mestinon. FYI – 40 years from diagnosis and it doesn’t get any better. So designated driver for me!

    • #17723
      Sharon Haw
      Participant

      My face flushes and gets hot to touch immediately from alcohol but it subsides quickly. I rarely drink and 1 glass of wine is my limit but even that gives me insomnia that night. My neurologist said to avoid alcohol and coffee. I’m only on Mycophenolate (CellCept) now. The flushing was worse when I was on Prednisone and Mestinon when I was first diagnosed in March 2019. I  had to stop taking Mestinon because after 3 months, my eyelids twitched so much, I could barely see to drive, and I had slightly elevated liver enzymes.

    • #18009
      Mike
      Participant

      I’m taking 240mg pyridostagmine and have the equivalent of 2-3 beers’ alcohol per day. So far I haven’t seen a correlation between when and how much I drink and change in my usual MG symptoms.

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