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    • #17574
      Michelle Gonzaba
      Moderator

       

      I’ve started to become more restless and am itching to travel. Even though I want to get out, I’m still nervous about sitting in an airplane for a few hours and being around a large group of people.

      Other than the vaccine and face masks, are you taking any other precautions when traveling? Have you traveled recently? What was your experience like? What tips would you give to other people with MG?

    • #17575
      Robert B.
      Participant

      If you’re fully vaccinated, and especially if you’ve received the booster, my opinion is for you to “go for it”! Wear a mask indoors around crowds and I think you’ll be fine.

      I have generalized MG, receive IVIG infusions 4x/28days and take Mestinon 4x/day, so a pretty high risk case. We’ve flown twice this year and everything went well.

      The news by Pfizer of this new pill Paxlovid, which they say is 89% effective for high-risk patients, to keep them from hospitalization and death, is yet another game changer.

      • This reply was modified 6 months, 1 week ago by Robert B..
      • #17582
        Scott McCormack
        Participant

        Before I retired two years ago, I traveled three out of four weeks and always noticed that people from Asia on planes often wore masks but I didn’t understand why.  I sure do now.  I am traveling on a cross country flight in a few weeks and will have an N95 mask (with valve) plus a standard 3-layer mask on top of that.  Social distancing isn’t an option on aircraft anymore but if you opt for the extra legroom area offered by most carriers, it will reduce the density somewhat.  Pick up your own water bottle in the terminal before boarding.  The food on the flight should be safe but you can also bring your own on.

        In short, enjoy your travels.  You should be fine.

        I am vaccinated but declined the booster on doctor’s recommendation (I went from minor facial MG in remission to moderate gMG two weeks after my second Moderna shot.  Maybe a coincidence but there seems to be traction of this happening with more than a few people).

        Happy travels!

    • #17580
      Amy Cessina
      Participant

      This may sound ridiculous to some. But I put two squirts of a saline nasal spray in each nostril once a day. It’s called Xlear nasal spray and has xylitol and grapefruit seed extract.. For a while they were trying to get emergency usd authorization for covid but I don’t think it happened. You know how people use xylitol gum or mouthwash because it kills bacteria they claim it can rinse out your nostrils. Not sure if it really works but any time I think I might get exposure like when I had oral surgery I sprayed a few more times in a day. Plus my son brought home a monster cold from high school I caught it but sprayed every  six hours it never blossomed and went away in a few days. So it can’t hurt but not sure if it helps. Still use it religiously.

    • #17584
      Claire M Walsh
      Participant

      My case sounds similar to Robert B. However, I developed no antibodies after my first two vaccines, although others seen by my Neurologist did ( was on very high doses of Prednisone back then). After  the third vaccine, I had a response,  but my numbers were not very high. I think any response shows a positive so I did not get too excited. I am on IVIg x2 every 3-4 weeks, Mestinon and CellCept and a low dose of Prednisone. Since I am 76 and my grandchildren are scattered over this country, I am not willing to stay at home this year. We have flown twice without incident, kept my mask on, and tried to get as close to the front of the cabin as possible.

      Wondering if any of you have had an antibody test after your vaccine? I cannot find a range for the test but hope someone can enlighten me. Was advised to continue using all precautions.

    • #17585
      Greg Goff
      Participant

      After reading comments on travel I am concerned about getting the booster shot. I got my first shot on February 1st. I was diagnosed with Covid on February 19th and could not get second shot until I was symptom free. My second shot was on March 9th.  I was experiencing double vision the end of March which was later diagnosed with Generalized  MG. My Neurologist believed the Covid triggered my MG. My family believes it was from the shot. I want to get booster but do have some concerns.

      • #17586
        Claire M Walsh
        Participant

        Greg, I had major surgery ( a back fusion) exactly 2 MONTHS to the day before my diagnosis.  It is often mentioned, but not scientifically proven, that any stressful event can trigger MG. I’m now 10 and 1/2 months into my disease and  76 years old,  and I have come to realize that I probably was showing some minor symptoms of MG prior to my diagnosis. I had always been an active person ,  walked and travelled alot, and I had really “slowed down”. Of course I attributed this to age! But one night I was unable to speak clearly which sent me to the ER. I was lucky that I was diagnosed within days after that by going into the major medical university in my hometown. SO…I tell this story only to say it may or may not have been your vaccine. If you have a good Neurologist that you trust, he or she may be able to  help you make a good decision about the 3rd vaccine. Have they ever tested your antibody level?  I would hate for you to catch Covid again!!

         

      • #17625
        Jack Stayton
        Participant

        I have to ask, how do you get tested for antibodies? Do you redo the original diagnostic tests for MG? I asked my neurologist to tell me how I was doing on my meds to decide on a change of medication or determine if ever go into remission and he told me these tests don’t really tell you the severity of my MG. I keep reading from some of you that you get tested quite frequently so please tell me what you know?

    • #17588
      Amy Cessina
      Participant

      My MG was triggered by a severe viral infection.

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