Myasthenia Gravis News Forums Forums Life Hacks and Tips Misconceptions About MG

  • amy-cessina

    Member
    September 1, 2021 at 8:07 pm

    They blame everything on something else except MG. Like “everyone chokes on food sometime”. The worst one for me was when I was having trouble swallowing my husband seriously told me to “not swallow for a while.” Actually my husband  is not very understanding.

  • scott-mccormack

    Member
    September 1, 2021 at 8:10 pm

    The biggest misconception I hear is ‘Are you feeling better now?’.  Undoubtedly due to being a rare disease, people don’t understand this is a lifetime disease, not an illness that passes like the flu.  Couple that with the snowflake effect that makes MG different for everyone as well as every day different for each sufferer, it is impossible for those not afflicted to understand.

    • robert-b

      Member
      September 1, 2021 at 9:04 pm

      You’re exactly right.

  • robert-b

    Member
    September 1, 2021 at 9:08 pm

    I’ve had two neurologists since I came down with generalized MG in 2014. In conversations about what I’d like to be able to do, both have said “Why can’t you play golf?” I’m like, what planet do you live on?

  • DocTim

    Member
    September 2, 2021 at 3:10 pm

    I’ve slowed down sharing much about my MG struggles or treatment.  So few can grasp it.  I often get, ‘glad you’re getting over it’ when I have a good week. Hard to know what to say sometimes. Thankfully, I have a very loving and helpful wife who has studied this thing and knows the journey I’m on.

    Everyone needs someone who gets it and will listen to the updates and concerns. This forum can serve that purpose to a good extent. Lots of good advice and encouragement here.  Thanks to all who moderate and share.

  • chrism

    Member
    September 3, 2021 at 8:09 pm

    Biggest misconception for me is how little even my closest friends understand the sheer emotional toll trying to “live normally” when being pumped with suppressants can be.

  • john-ulfelder

    Member
    September 4, 2021 at 12:24 am

    Fortunately I have several extended family members who work in the field of medicine & have an understanding of MG and an appreciation of what I am going through. With others I have to provide a fair amount of information and updates on my condition & treatment  Biggest misconception is that MG is not generally ‘curable”and is a lifetime disease with ups & downs.

  • ella-guthrie

    Member
    September 4, 2021 at 10:05 pm

    My ex-husband recently said to me, “You self-diagnosed yourself with that disease because you were studying it in nursing school.”  That’s the understanding I got from him (we were divorced).  I knew about what happens at the neuromuscular junction with MG, but we didn’t study how MG affects ones body and life.  I have mild generalized MG which can get into serious MG.  I know the triggers and try to avoid them, but generally I do well, as long as I take the proper care of myself.  Still, I’ve seen neurologists who doubted my diagnosis.  I saw them only once.  I just keep my mouth shut and live my life.  Fortunately, I have good neurologists now who take good care of me.

    • jonathan-a

      Member
      September 5, 2021 at 10:18 pm

      Reply to Ella.  Since my MG diagnosis, I have found, bought, and read several good, first person accounts of their journey to an MG diagnosis.  All the books but one were excellent and double the price I paid for them.

      One book is    ATTACKING MYASTHENIA GRAVIS  by Dr. Ronald Henderson.  He is an experienced baby physician, and started getting all the MG symptoms, but could not piece them together for a diagnosis.   When he finally started getting chewing and swallowing issues, he realized that he probably had Lou Gerig’s disease and announced it to his family.  The book tells the journeys of the baby doctor, as well as three friends with MG that tell their journey to MG also …. one is another doctor, one is a southern minister, and the third is a high school coed … who is now in college and a NEW JERSEY activist and chapter president of the NJ support group.  All four said they also  …. have gained like me  …. up to 40 lbs  … by being forced to take PREDNISONE.

      Later when he did research further, he realized that his diagnosis did not match up with ALL HIS SYMPTOMS   …. so he finally called his Neurologist associate to book and appointment and tests ….and found he had MG instead.

      So some people  … such as your ex  … may assume things  … but MYASTHENIA GRAVIS is so so rare  …. that even these two doctors could not correctly self diagnose. I understand from personal experience that doctors have general knowledge  …. but with such specialization these days  …. most doctors can be clueless about rare diseases.    It took me 8 months to be diagnosed.  EVERY DOCTOR who saw me failed.  I was finally diagnosed by an intelligent and observant hospital floor nurse  … who saw my many MG symptoms firsthand  … and recognized my problems from similar symptoms with other patients at her hospital.

      My mother had also a different undiagnosed illness.  The doctors could not identify her disease  …. so they discharged mom to a rehab facility.  Another great HOSPICE nurse at mom’s facility  ….. recognized her symptoms also  … and got her tested so she could get the correct medications.  Unfortunately  … the correct meds worked for mom …. but her body had already started shutting down … and it was too late for mom to recover.

      So people can believe things … but medicine is so complicated these days  …. that even our own doctors  ….. do not comprehend things  …. when we try to explain to them  …. that  … we, as MG patients,   can not tolerate certain drugs and procedures that they administer to mainline patients.

      So be safe, stand your ground,  and stay healthy  … and in remission also.

       

  • cyndi-dehoff

    Member
    September 5, 2021 at 2:08 am

    When people ask how I am doing with my MG , I now say….There are no days off from this disease.  Lots of meds, therapies and rest.   I find keeping it general and quick usually works for me describing life with a invisible illness

    I was told by a good friend when I was first diagnosed that “it’s a good thing I didn’t have MS cause that was a bad disease.” I didn’t know what to say at the time.

  • jonathan-a

    Member
    September 5, 2021 at 2:17 am

    Almost everyone that I have met, has absolutely no concept about what Myasthenia gravis is.

    After 8 long months of suffering, doctor appointments, tests, eye issues, etc.  ….. I was finally diagnosed by an intelligent floor nurse, who listened, and recognized my 8 or 9 MG symptoms,  that every doctor was ignoring!!!   She had patients on her floor … who had my symptoms. The next day, she gave me a four page printout  … that I still have  … over 15 months later. The papers listed all my symptoms that I have been trying to tell all the doctors … including the fact that it is worse in the afternoons  … but you can recover some if you lie down and rest.

    I am currently reading my latest MG patient book that I bought on an eBay search   “COPING WITH MYASTHENIA GRAVIS – MASTERING YOUR LIFE”.    It tells the facts and history of MG and then 50 MG patients tell their backstory journey.  Then afterwards the doctor author highlights the most important parts of their story with medical facts.    The first fact sheet should be a required poster in every medical office  … and the book should be in every doctor’s library.

    I was sedated, intubated, and had total hearing loss from February 5 to 27, 2020, due to bad side effects of Antibiotics.

    Many go to an eye doctor, with droopy eyelids and vision issues  … the doctor recognizes a disease.  The eye doctor refers to MG patient to a known neuro-eye doctor acquaintance,  and that second doctor recognizes the possibilities, and refers the MG patient to an actual neurologist friend  …. who does tests, confirms a Myasthenia gravis illness, and get us successfully diagnosed and treated.

    So I guess the first line of defense for future MG patients  … needs to be a properly educated eye doctor, as well as the public in general.  It would have not taken me 8 months to be diagnosed  … if my referral  eye doctor had listened to me and appreciated my droopy eyelids, competing eyeballs ,  and shiny streetlight holiday star light rays for what they were.

    I  have never worn eye glasses until I got a pair from the Dollar Store for reading small magazine print a year earlier.  My doctor was trying to prove I had diabetes… which I have never ever had,  so she sent me to a eye doctor to prove I had diabetes eyes. He said I had a better chance of getting cataracts than diabetes  … but did prescribe 20/30 glasses for reading.   It would have been a primo moment to diagnose Myasthenia gravis…. but neither the doctor or his nurse recognized obvious MG symptoms.  I even had to hold my eyelids up for the nurse … so I could look into that black goggle box of her’s .. so she could see my eyeballs.

    Many are undiagnosed  … waiting for the “one in a thousand eye doctors” to recognize and save us.  We must also educate the medical field based on personal experience  … as well as the general population.

  • rick-federmann

    Member
    September 6, 2021 at 12:18 pm

    I echo Tim Lindsey’s comment, above.  I only share info on an as-needed basis.  Most folks have a short attention span and jump to conclusions that fit what they already know, which nearly always results in erroneous assumptions.

    Even my wife, who is an RN, continues to get some things wrong.  She is very supportive, but when I’m dragging she will always ask if I need a nap.  No, I don’t need a nap.  I need to sit or lay down quietly until the MG symptoms go away.  But I’m not sleepy; my muscles are fatigued.

    This may seem like a nit, but when you are in your 60’s and your wife often asks if you need a nap while in the company of other people, it’s embarrassing because it portrays you as a tired old man.

     

  • DocTim

    Member
    September 6, 2021 at 1:52 pm

    RICK FEDERMANN … You are so correct about the short attention span of folk. Even those who really care about me and want to help need a lot of re-education.  I sometimes resort to a frequent movie line, “it’s complicated”.

    My wife asked me a few times in public at first how I was doing, do I need a break, etc..  Thankfully, we came to an understanding about that.  I’m 70 yrs, but have had & still have energy for work, golf, travel.  My MG has been managed from a very low place one year ago to a very manageable situation today.  I’m grateful for the therapies and help I’m getting from VA Health.  They do seem to get it and are extremely supportive.

    This forum also has been a tremendous stress reliever for me. When others don’t understand, it’s good to talk with people on the same journey.

    God bless & all the best to you.

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