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  • The Threat MG May Stop the Fun

    Posted by Jodi Enders on August 26, 2021 at 10:11 pm

    On Sunday, I am taking my first several-hour drive since my thymectomy, and I have high hopes that all will go well during my four-day camping trip.

    However, with driving alone, there is always the anticipation that something could go wrong. One MG symptom flare would ultimately throw off what I plan to be an enjoyable meet-up with a friend to catch up and take photos.

    I am learning to adapt my hobbies to MG, for example, always doing physical activities in the heat or for extended durations with another individual. Nevertheless, I still grapple with accepting that things won’t always go perfectly as plan.

    How do you combat this constant threat that MG can interrupt long-planned in advance activities?

    Jonathan A replied 2 years, 8 months ago 3 Members · 3 Replies
  • 3 Replies
  • Bill Wheeler

    August 28, 2021 at 11:54 am


    Best of luck to you on your first post surgical trip! You will do fine I am sure; stop when necessary for a break and refreshments as well as to look for something interesting, even at a highway rest stop!

    I am only 1 year in with my MG but dont dwell on what ifs because I fully expect any flare ups will be only a minor inconvenience, a postponement of what I am doing, not an end  to it. I may cause my own problems if I stress on what is next, or if the other shoe is about to drop, so I try to remain positive. Make your plans so having to extend a trip a day or two is option B; sometimes my eyesight is , especially for reading or close work, not cooperative so I make a change in my plan for that day, and dont travel anymore than necessary, maybe  staying an extra day.

    There is always something beautiful to see or do if you look for it; someone you might not have met, something in nature you would have missed, or even a storm you missed because you changed your plan. Luckily, I work for myself so I can change plans without employment disruption.

    Not sure I helped much, but you have good insights into the effects of MG as you have discussed in your topics, and you will do well and then look forward to the next adventure!


  • Amy Cessina

    August 28, 2021 at 3:16 pm

    I wish you all the best on your first trip. I know exactly how you feel. I felt the same way and still do to a certain extent. Mentally, It does get easier as time passes. In my case I have a good amount of warning nothing ever comes on suddenly for me but I only learned that over time. Plus I always google the closest hospital. Sad to say but it gives me piece of mind.

  • Jonathan A

    August 29, 2021 at 8:22 am

    MYASTHENIA GRAVIS has really stopped all my fun  … but as I get farther away from my last MG Crisis, I am starting to relax a bit and start venturing out of my comfort zone.  I started showing MG eye issues, dropping eyelid problems,  quickly followed by weak arms and  fingers, legs wanting to melt,  and a neck that would weaken and dump my head to my chest.  It started on July 25, 2019.

    After 6 months of Cigna Healthcare doctors and their referrals, without any diagnosis,  I went to a Banner Hospital Urgent Care Center and they failed me too.  I was finally diagnosed  on March 24, 2020 ……   after 8 months of searching for my disease and released from the third hospital on June 12, 2020.   From my first weaknesses, thru 4 months in three hospitals, and many months later,  ….. I was TOTALLY SCARED STIFF.  I stayed at home as much as possible  … only leaving hesitantly to go to doctors appointments and to the grocery/pharmacy store.  At the grocers/pharmacy  ….  my head would dump, and my legs go weak  … so I had to sit in the deli and pretend to read the store ads  … in order to put my head on my hand/arm and rest my body.

    After having to return to hospitals #4 and  #5 for the month of November 2020 for an IRRIGATION/DEBRIDEMENT operation for Septic Bursitis redness and swelling of my arm, (as my immune system is TOAST from all my MEDS), I was finally released again  on November 27, 2020  and have been in totally remission since then  …. except for total ONSET INSOMNIA and Bicep/Back Shoulder Muscle Pain.

    So as I get more confident about my disease, and its effects and the MEDS side effects,  I am now comfortable about driving longer distances around town,  and also have restarted driving at nights now  ….. that my vision and eyelids are back to normal since my 3-24-2020 IVIG treatment and 14 new  MEDS.    BUT IT STILL SCARES THE HELL OUT OF ME  … to go out of my expanding comfort zone.   I can never ever leave town or travel out of state EVER AGAIN.   I was extremely lucky that these last TWO YEARS OF SEARCHING AND MG HELL  … were in town.  I knew where my pills, the doctors, and the hospitals were, and could call my sister … if I melted again.   One time, after leaving a doctor’s appointment, where the doctor continued to be clueless about the 8 of 9 unknown MYASTHENIA GRAVIS symptoms, I returned to my car and my right hand was too weak to grip and release my car’s parking brake,  ( I finally hit the button at the end of the release lever with a cream of chicken soup can  … and the brake lever released and dropped)  so that I could drive back home and go back to bed.

    If I flew to San Diego again for a trip or a vacation  … and I had a MG crisis  …. where are their hospitals, how would I get to an Urgent Care, get my MEDS, and find an intelligent floor nurse again  … who knew what  “MG” means in ENGLISH?  In February 2020  …. I already DIED, and had to be RESUSCITATED at BANNER URGENT CARE  …. when they gave me ANESTHESIA to stop me moving for MRI tests (as I was flat on my back, choking on my own phlegm  … and I did not come out of ANESTHESIA and the nurse called a CODE STROKE.)     If Urgent Care admits me to their hospital  … when I am “OUT OF TOWN”  … who will check me out of my motel, return my rental car, hold my motel belongings, and get me out of the hospital, and on a plane home.  I AM GROUNDED NOW FOREVER.  The risks for me is too great  …   I  have very thin O positive blood  .. but I am on 5 blood thinners from 4 doctors, as well as taking over 2000 mg of CELLCEPT  to make my immune system TOAST …..  so I can’t RISK  INFECTION or BLOOD LOSS by probing doctors  … looking in the wrong direction, exposing me to contracting three varieties of PNEUMONIA in ICU,  and giving me DANGEROUS STATINS, STEROIDS, ANESTHESIA, and ANTIBIOTICS  again …. sending me back into another MYASTHENIA GRAVIS CRISIS   … to say nothing about the”HORROR STORIES” of financial ruin  … if they decide you need a air vac ambulance pickup.  So STAY CLOSE TO HOME,  WEAR AN MG MEDIC ALERT BRACELET, and don’t LET THEM SEDATE YOU EVER  ….    ….. SEDATED VICTIMS can not tell the clueless doctors what your symptoms are, that you have MG, and there are countless “BAD MEDICATIONS” that will make the situation even WORSE  … such as nurses having to call a CODE STROKE, and a priest for LAST RITES a second time..

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