NeuroTalk Support Groups

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

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

- - Spot in Lung (https://www.neurotalk.org/myasthenia-gravis/257487-spot-lung.html)

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

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.

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?

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

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