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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-29-2021, 12:16 AM
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Legendary
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Let us know how you get on with the GP.
If you need to go to Mayo again, perhaps phone a friend or confidante. |
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06-29-2021, 05:14 PM
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Hi. Today thank Heaven for my daughter!!! She always evolves from her angry places. I had her there at doctors office and she fought like crazy to just get 2 basic pieces of help. Nope it wasn’t happening. She negotiates daily as a project manager but this woman was vacant. I saw it in her eyes. Near end I said looking straight into her eyes “yes I see it in your eyes you aren’t with me in this.” My daughter said I give her a minus 40 on the compassion scale. . It was weird. It sure wasn’t anywhere in my reality. I asked her if she wanted me to do something different at Mayo. She never answered. She was more concerned with completely changing my pain treatment than helping me breath. I won’t see her again. My daughter is stunned. Sculptor44
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| "Thanks for this!" says: | Lara (06-29-2021) |
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06-29-2021, 07:02 PM
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Legendary
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Gosh, that's more terrible news though about yet another doctor. What an awful waste of time and effort to go though this again. I'm very pleased your daughter was there with you to witness this. |
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06-29-2021, 07:55 PM
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Today would have been the day to have pulse ox of 88%. This of course was decent at 97% in her office cause of Mestinon and lots of coffee. My main concern when at a visit like this is timing Mestinon well and adding coffee to help legs work hopefully well enough to not fall. She even tried to suggest Solumedrol was not used in Myasthenia. And when I said Mayo pulmo supported steroids she said she didn’t read it that way. Perhaps this very poor doctor causing my daughter to have to fight on my behalf so completely was a harsh reminder for her of needing a much better option. I actually did very good prep in writing as this was supposed to be about my history. I remembered I am due for an MRI to check on my brain lesions. This doctor was so extraordinaryily unaffected by anything I said. It was a bit frightening. Pathological. She did mumble at one point about getting other docs leftovers. Sculptor44
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| "Thanks for this!" says: | Lara (06-29-2021) |
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06-29-2021, 10:05 PM
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I just realized if this doc documents here very hard and limited view of me based on what she said today it could affect my ability to get my solumedrol that is at least keeping my head above water till more doctoring at Mayo. I will breath a giant sigh of relief when I get a shot this week. Last few days have been a lot worse. There is something new thru chest. There is a talented PA at my pulmo office. She worked with my former doc. Maybe a person to help. Sculptor44
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07-04-2021, 10:40 PM
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About the new doc. It struck me tonight that she isn’t any different than my last medical person who was a very young PA. This new doc doesn’t think I have Myasthenia Gravis. At end she said solumedrol isn’t used preventatively for Myasthenia. There was a senior doctor in in this practice who had very good ratings and specifically spoke of his compassion. That’s who I wanted. I had a very kind and caring doc for me and my kids for at least20 years. He retired about 8 years ago. He said he agreed I had Myasthenia Gravis.. Meeting this doc sure clarifies some of why things went poorly at Mayo. She certainly isn’t someone that would advocate for me. For the time being I hope my PA I saw will take me back for essentials like pain meds. Communication is so very messed up because of my MG combined with failing vision and failing ability to talk. My neuro sled me to write her a note in the University MyChart about current challenges. Mayo Pulmo secretary said similar. But I am so sick in the ways I noted doing that would take abilities and brain power that is so so minimal. I just found out a voicemail to my little sister never was answered because she couldn’t understand what I said even with several tries. She texted me and asked to know if I needed anything. And my voice now is better that it’s been cause of solumedrol shots since August! Sculptor44
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12-26-2023, 05:45 PM
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Good timing to find this thread from before my Last Mayo Clinic Trip. I am reaching for answers today. Sadly there are similarities to what is going on now. At least I had the ER visits to keep from failing. I may have now lost that. I read the medical note from the last visit on October 31. It was truly awful. I came to write because I. Checked my legs and see my muscle wasting is again worse. More on all this later. Sculptor 44
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12-30-2023, 10:23 AM
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This Doctor new in 2021 was a Big turning point here and unfortunately at Mayo Clinic. I am living with consequences of that doctor and trip to Mayo. I lost my Great Pulmonologist at Mayo that Visit. And dear Heaven do I need him NOW!!!! My best, smartest AND most Compassionate doctors have been 3 Pulmonologists. It has been too long taken for me to really get Neurologists don’t have enough pulmonology knowledge or experience. That may end my life. Sculptor 44
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