NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Need new plan (https://www.neurotalk.org/myasthenia-gravis/256754-plan.html)

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

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

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

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