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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-21-2022, 03:02 PM | #1 | ||
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I read the ER notes I requested. I do have a new spot in my lung.. So I called my pulmonologist and told him the blue toes and being worse and asked him to review X-ray.. I said I refused medication he offered me as it was bad for Myasthenia and tried to negotiate a different drug which Mayo had used on me. ER doc said no. Will let you know whAt happens. Sculptor 44
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"Thanks for this!" says: | Lara (02-21-2022) |
02-25-2022, 08:45 AM | #2 | ||
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So apparently this is another incident where nothing is going to be done or followed up on unless I go to Mayo Clinic again. I think of the day my daughter and I sat with Mayo Pulmo a year ago last May and he was freaked out by how big a change there was in jut one year in the negative progression in what my paralysis at diaphragm is doing. Nothing Like that happens here in Iowa except occasionally a caring ER Doc worried about me. Sculptor 44.
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"Thanks for this!" says: | Lara (11-16-2022) |
11-16-2022, 04:42 PM | #3 | |||
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Legendary
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Hi again,
What's happening with the spots on your lung? Has anything else been sorted since these posts? Are they cysts or something else? |
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11-19-2022, 01:46 PM | #4 | ||
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Thank You for asking. I know there is a lot going on thru my Chest and I recently reconnected with my longtime Pulmonologist because of that and difficulties with my current situation in Assisted Living. During Covid I was. Clear pulmonologists were too overloaded. Because I have mainly gotten care thru the Emergency Room for over 2 years I have learned there are big issues with Chest X-rays. First thing I learned after many visits After an in-depth X-ray Analysis at Mayo Clinic was that I had to POINT the X-ray techs to the abnormalities I knew about in my best or it may not be noticed. I excuse that they were seeking Covid things. The Mayo Pulmo so scared me and my daughter on my X-rays it was hard to handle. It is possible I can have a discussion with my old pulmonologist . I am deeply grateful to the ER doc who was so freaked out by my breathing he made sure I was given IVIG. In someway it resolved or improved the new problem in my chest that I wasn’t getting help with. At moment I don’t even have a way to get to a doctor. I won’t discuss the issues around that here. I will have the report on my overnight oxygen soon. Sculptor 44
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11-25-2022, 12:16 AM | #5 | ||
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It seems my recent Overnight Oxygen test indicates a need for Supplemental Oxygen.. I am well aware my daytime Oxygen levels have been going down most especially because I haven’t had a Solumedrol shot for about 2 months.. How to be seen by a doctor after moving to assisted living facility has no answer. I don’t know the answer to this issue. I found out the hard way the lone nurse here is not safe for me to deal with on bigger issues. Sculptor 44
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