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


advertisement
Reply
 
Thread Tools Display Modes
Old 02-21-2022, 03:02 PM #1
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default Spot in Lung

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
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (02-21-2022)

advertisement
Old 02-25-2022, 08:45 AM #2
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

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.
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (11-16-2022)
Old 11-16-2022, 04:42 PM #3
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Lara Lara is offline
Legendary
 
Join Date: Sep 2006
Posts: 10,984
15 yr Member
Default

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?
Lara is offline   Reply With QuoteReply With Quote
Old 11-19-2022, 01:46 PM #4
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Default

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
Sculptor44 is offline   Reply With QuoteReply With Quote
Old 11-25-2022, 12:16 AM #5
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Sculptor44 Sculptor44 is offline
Member
 
Join Date: Oct 2020
Posts: 180
3 yr Member
Unhappy

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
Sculptor44 is offline   Reply With QuoteReply With Quote
Reply

Tags
bad, drug, lung, mayo, spot

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 04:03 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.