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


advertisement
Reply
 
Thread Tools Display Modes
Old 06-29-2021, 10:05 PM #11
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

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
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (06-29-2021), Lara (06-29-2021)

advertisement
Old 07-04-2021, 10:40 PM #12
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

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
Sculptor44 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Atticus (07-04-2021), Lara (07-04-2021)
Old 12-26-2023, 05:45 PM #13
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

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
Sculptor44 is offline   Reply With QuoteReply With Quote
Old 12-30-2023, 10:23 AM #14
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

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
Sculptor44 is offline   Reply With QuoteReply With Quote
Reply

Tags
disturbed, oxygen, plan, supplemental, talk


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


Similar Threads
Thread Thread Starter Forum Replies Last Post
Having a Plan catra121 Reflex Sympathetic Dystrophy (RSD and CRPS) 4 09-25-2017 10:17 PM
Plan B AmericanAngel Sexual Disorders & Sexuality 1 11-22-2009 04:19 PM
I have a plan Blessings2You The Stumble Inn 10 08-25-2008 04:48 PM
How to plan for ALS? SteveS ALS 6 10-05-2006 02:24 PM
Is There A Plan? geraldo Parkinson's Disease 3 09-26-2006 08:07 AM


All times are GMT -5. The time now is 06:51 PM.

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.