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


advertisement
Reply
 
Thread Tools Display Modes
Old 05-25-2017, 04:41 PM #1
Jane1 Jane1 is offline
Junior Member
 
Join Date: Aug 2016
Posts: 24
5 yr Member
Jane1 Jane1 is offline
Junior Member
 
Join Date: Aug 2016
Posts: 24
5 yr Member
Default Saw Dr Weiss today

Yes, he had a cancellation and got me in earlier. I have done better in some ways but the disease seems to be getting worse. Have started strangling, and arms are weaker. I can walk without falling now but stagger terribly when I'm flaring. Dr Weiss was very professional, and said he could see where my previous treatment was "messed up." Based on my clinical manifestations over the last two years he felt I clearly have mg. The Drs in my home town had tapered me from 60 mg to 10 mg of predinosone. I will say that I felt better at 30 mg than I have felt in a long time. Dr Weiss has me raising The prednisone to 30 mg for a a month and keeping Mestinon the same. He wants to go slowly and methodically . Thank you for all of your concern. I think I am from the "show me" state because I tend to want to slide back into denial... Dr Weiss said with my test results thus far and my symptoms that it couldn't be anything but MG. So there is the rest of the story
Jane1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ErinBear (05-25-2017)

advertisement
Old 05-25-2017, 07:21 PM #2
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

Duh.

And the doctors who did that fast taper could have killed you (via an adrenal crisis and MG crisis).

Dr. Weiss is highly regarded. I hope he came up with a way for you to have crisis treatment, as well as "regular" treatment. Did he give you a diagnostic letter for your files? You can ask him for that. Any time I have a significant diagnosis, I make sure that I have a statement about what the diagnosis is, how it was made, etc. That will make dealing with other doctors easier.

But Jane, your "story" is only beginning. Living with MG is the real battle. At least you now have a doctor in your corner.

All my best,
Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Jane1 (05-25-2017)
Reply

Tags
keeping, mestinon, methodically, slowly, weiss

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


Similar Threads
Thread Thread Starter Forum Replies Last Post
Where would we be today PamelaJune Survivors of Suicide 4 12-15-2017 10:29 PM
Today Ziggo Traumatic Brain Injury and Post Concussion Syndrome 12 03-23-2012 10:16 AM
today bad Cat_In_The_Hat_ Multiple Sclerosis 12 02-08-2008 07:29 AM
Today I saw... Riverwild The Stumble Inn 13 02-02-2008 11:56 AM


All times are GMT -5. The time now is 04:50 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.