Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 10-09-2023, 10:00 PM #1
Sculptor44 Sculptor44 is offline
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Join Date: Oct 2020
Posts: 180
3 yr Member
Default Pulmonologist Appointment

With Covid and all This first contact in too long. It was before Covid . I hoped to see him but my body was failing so badly plus my ride pulled out He ended up offering a phone visit. I was so so sick that day I am surprised I managed what I did. Low Oxygen is really affecting my eyes and brain so I have to have faith in my ability to communicate under the worst of circumstances. He said he believes as he always has that it is my muscles and how can he help. I said neurology is failing me at the University. He thought another doctor was treating me and giving me IVIG. After I went to ER last Monday I called and left message that I had gotten Solumedrol so I can walk well enough to come see him AND I can now Speak somewhat better. I left information in the message I had not shared yet like the State issued me an IPAD based on testing that proves my voice is failing. I gave info on doctor who did this. It was a former Family doc. She was very nice but fell victim to the lousy neurologist here in my city who blocked me last year from getting additional doses of IVIG. He is not my current neuro. My daughter is checking out what happens where I live now if I press my neck alarm.. we both know enough after a year of being here that it is NOT going to handled very well. My question is how dangerous is it and what can I do to make it safer. There is only one nurse here and she doesn’t have conversations. It is really weird. I asked her where she got my medical info and she won’t say. I am grateful for talking with my pulmonologist. He may not understand my complicated Chest issues but he cares a lot. Sculptor 44
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