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    • #18391
      Michelle Gonzaba
      Moderator

      It’s easy for me to remember the bad experiences I’ve had with health care providers. But I’ve come to realize it’s better for me to acknowledge the ones who were great.

      My current neurologist is fantastic-she listens to me, doesn’t talk down to me, and has a lot of knowledge of my disease and others like it.

      What are some of the best experiences you’ve had with health care providers?

    • #18407
      Dave Hall
      Participant

      I was very fortunate in that I got my MG diagnosis very quickly. My farm is outside of Houston, Texas. Consequently, all my doctors are in small, country towns. Not the usual place you would expect to find exceptional medical care. After I retired, I decided to get licensed so I could sell my goat milk cheeses at a farmers market. My wife found a micro dairy that was for sale, just 1.5 hours away. I had a friend in the truck as we drove down to pick up the dairy. My eyelids started to fall, for the first time. I had no clue as to what was going on, after all, we were having a conversation, so I wasn’t falling asleep. I scheduled an appointment with my GP. He just asked what was going on? I told him how I took my wife out for a nice steak dinner four months ago, but I only ate 1/2 of my steak because I could not chew it. Then a couple of months later we went to nice fried chicken buffet, but I could not chew the chicken. Then the trip to get the dairy. He just looked at me and said, “Myasthenia Gravis”. My comment, back at you doc. He had seen two patients, back when he was an intern, that had MG. The blood test confirmed his diagnosis.

      • #18415
        paul spychalski
        Participant

        What did your Doctor do to help your MG? I’m glad it helps you.

      • #18423
        Scott McCormack
        Participant

        I am lucky to have many Medicare insurance choices where I live (Southern California).  I chose Kaiser and am very glad I did.  I was diagnosed by my PCP 5 years ago with localized MG (jaw, mouth and eyelids) and referred to a neurologist, put on prednisone and Mestinon, and symptoms went away after about two months.  Four years later (March 2021) I came out of remission with most muscles in my body extremely weakened.  Kaiser ran tests on my heart, breathing, kidneys, and  liver to rule out other possibilities before diagnosing it as moderate generalized ACHr positive MG.  My neurologist  took a conservative approach with a higher dose of prednisone and time release Mestinon. Since my symptoms have not improved much, I am now also doing IVIG infusions.  My doctors listen and are always available to communicate with.

    • #18417
      Jonathan A
      Participant

      Gosh, Dave, you are one EXTREMELY LUCKY GUY  … to come across a medical “professional” who recognized your OBVIOUS MG SYMPTOMS and diagnosed you.   My medical angel was a third floor nurse, at my second of five hospitals,  who recognized that I had ACUTE OCULAR MG as well as EVERY symptom of GENERALIZED MG.

      I was attempting to watch TV and she recognized what I was trying to do  … with one eye closed, my left eyelid held up by my weak left hand, held up by my weak right hand.  She wrote on my paper pad in reply (first hospital gave me hearing and speech loss due to antibiotic side effects) and said that she knew exactly what I had, as other patients right there at St. Joseph’s Hospital had the same symptoms that I wrote on my paper pad.

      She said I had MG, and got me tested, IVIGed, and on CELLCEPT and MESTINON.  It took me 8 months before I could find a properly educated professional that knew about MG,  and I had already, in my search, told every doctor,  who saw me, that my grandmother died of LUPUS,  which is also a neuro-muscular disease.

      My new Neurologist,  Dr. Kilian, is worth his weight in GOLD, does not look at me as if I had three heads, does not write me up as a POOR HISTORIAN ( no one can have 9 symptoms and only one disease), and at my first appointment, after 5 months in 5 hospitals,  Dr. Kilian, gave me my first physical in 30 years, and tested by my strength in various muscles,  even using the rubber knee hammer (which I had not seen in use in decades).   When you find a GREAT DOCTOR or NURSE, never let them go.  I had already been seen by an eye doctor, and in the first hospital by two neurologists and a neurosurgeon, who apparently were never told in med school …  about MG.

    • #18535
      Ms.Will
      Participant

      I was diagnosed in 2019 and surprisingly, it was my PCP who was concerned enough to refer me to a neurologist.  She was so puzzled by my sudden symptoms and kept assuring me that she wouldn’t stop and kept researching and even talked to her team before feeling comfortable enough to refer me with supporting symptoms.  Neurologists can be tricky sometimes.

      She made me feel reassured that I wasnt going crazy and something was wrong instead of brushing me off.

      Her referral sent me to some of the nicest doctors I have ever had.  Because my situation is so unique and I’m not a typical MG case patient they see and I have other autoimmune issues, my case is part of the research group here in Colorado.

      It been refreshing when doctors pay attention like they are supposed to and genuinely care about getting you better.

    • #18568
      Marguerite Thibeau
      Participant

      I’m seen at the MGB Clinic. I have had such great experiences with  them. I was concerned about the idea of a clinic, I was wrong. My Doctor is always there for me, backed by a knowledgeable team. She has come to visit me in the hospital, called me to check on me. Wonderful in every way!

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