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


advertisement
Reply
 
Thread Tools Display Modes
Old 02-16-2013, 01:24 PM #71
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
Originally Posted by limpy View Post
I use cpap for sleep apnea. If I don't use it, I snore and wake myself up repeatedly and cannot get a restful sleep.
I have this problem regardless of whether I use Xanax or not. My oxygen levels fall without cpap, but not enough to warrant oxygen therapy at this point.
I have questioned my doctors about the use of Xanax, given its sedating effect, and they seem to be comfortable with using it as long as it will enable me to be cpap compliant.
I understand. This makes more sense.
alice md is offline   Reply With QuoteReply With Quote

advertisement
Old 02-16-2013, 06:11 PM #72
Heat Intolerant Heat Intolerant is offline
Junior Member
 
Join Date: Aug 2009
Posts: 62
10 yr Member
Heat Intolerant Heat Intolerant is offline
Junior Member
 
Join Date: Aug 2009
Posts: 62
10 yr Member
Default

Sorry, I hadn't understood that they had not done their own tests.

Was your neurologist, for whatever reason, inexperienced as to how they would proceed on a patient without tests? (Or maye just too normative like some of the people on here, he was dreaming about what they should be doing ) Some patients need to be protected. He shouldn't have allowed you to set foot in there.

Nobody is primed for the kind of treatment where even doing exactly the right thing by the most perfect standard can leave you stranded.

It's clear that doctors would punish patients with conversion disorder, whoever they are and however few they may be. I've got to ask then, why not immunosuppression, Mestinon, and CPAP or bipap for everyone so that some of the rest of us -- who have never done anything bad to speak of -- can spend those precious years of our lives actually breathing and not paying for others' sins?
Heat Intolerant is offline   Reply With QuoteReply With Quote
Old 02-16-2013, 06:52 PM #73
limpy's Avatar
limpy limpy is offline
Member
 
Join Date: May 2012
Posts: 224
10 yr Member
limpy limpy is offline
Member
limpy's Avatar
 
Join Date: May 2012
Posts: 224
10 yr Member
Default

My local neurologist thought he was doing the right thing by sending me out. He had not gotten a diagnosis yet and was afraid for my life and was not too proud to say that he was in over his head. He had done his homework by doing the Lems test, even though it did not come back right away. He had no idea that I would be treated as I was or he would have never sent me there. He apologized to me profusely for what happened.

He had me on prednisone and as much mestinon as he thought was safe and the Emory team did not think I should be on any of it.

To my knowledge, the folks at Emory did not perform a LEMS test, but if they did, it should be coming back to them by now.
limpy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Anacrusis (02-17-2013)
Reply


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
My Wife & I - Similar Symptoms Within Weeks biofed New Member Introductions 5 07-24-2012 03:39 PM
Anyone have similar symptoms? itsmekath Parkinson's Disease 2 09-02-2010 09:47 AM
Symptoms similar to human form of mad cow disease LGL24 General Health Conditions & Rare Disorders 4 06-28-2009 05:32 AM
Psychosomatic symptoms SandyRI Reflex Sympathetic Dystrophy (RSD and CRPS) 9 05-10-2009 02:34 AM


All times are GMT -5. The time now is 02:04 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.