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


advertisement
Reply
 
Thread Tools Display Modes
Old 02-25-2009, 04:02 AM #11
neutro's Avatar
neutro neutro is offline
Member
 
Join Date: Nov 2007
Location: France
Posts: 346
15 yr Member
neutro neutro is offline
Member
neutro's Avatar
 
Join Date: Nov 2007
Location: France
Posts: 346
15 yr Member
Default

Becky, one quick comment on AnnieB3's latest post: in France, we have a special card which we carry in our wallet or purse to indicate to 911 or ICU personnel that we are myasthenics, it contains a short description of the disease, precautions to take and above all, medications to avoid and references (name and telephone number) for the neuro or MD in charge + present treatment.
I do not know whether such info exist in US, if not, it could be useful to get in touch with the MGA…
Maurice.
neutro is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ras1256 (02-25-2009)

advertisement
Old 02-25-2009, 08:38 AM #12
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
Ooo

OMG - you read my thoughts!! I was just thinking that early on, it was recommended that I get a bracelet identifying me as myasthenic. I was still in denial then, but just was considering getting that done!
ras1256 is offline   Reply With QuoteReply With Quote
Old 02-25-2009, 08:53 AM #13
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
Lightbulb

Hey, I was just thinking of that long, drawn out dissertation I gave you all on my symptoms and realized I had been using those steroid creams on the rash for some time prior to the neuro giving me the oral steroids. Do you think maybe that's why I get such an immediate boost from the oral med????
HUMMMMMM!

I have F/U with the neurosurgeon that did my coil today. I'm going to grill them the little complication I had following the procedure. Something about that procedure triggered this, I know in my gut.

This has been so helpful to bounce info. Thanks so much to all of you!!!

Becky
Quote:
Originally Posted by erinhermes View Post
I felt better after a few days - BUT I was also on IV IG at the same time. It was during my last real crisis, so I was on roids, mestinon and had that IV IG flowing into my veins as fast at they could give it to me........

I was started @ 10 mgs, doubled to 20 the 2nd day and by the 8th day I was at 80 mgs - @ 80 I felt GREAT!

Sounds like your neuro has things backwards........

I was told by my onc and neuro that steroids can initially cause pretty serious weakness - especially in the legs - learned that the hard way - got stuck - and that's why I was started on everything while still on the hospital.........

Hope you get some relief soon!

Erin
ras1256 is offline   Reply With QuoteReply With Quote
Old 02-25-2009, 12:20 PM #14
Scots Kat Scots Kat is offline
Member
 
Join Date: Feb 2008
Posts: 175
15 yr Member
Scots Kat Scots Kat is offline
Member
 
Join Date: Feb 2008
Posts: 175
15 yr Member
Default

Hi ras1256,
I wear a medicalert bracelet and now carry a steroid identification card. I've never had to use either, but I guess it's just another precaution. If nothing else my medic-alert bracelet has been the start of many conversations, especially with my pupils - kids are very inquisitive and I otherwise probably wouldn't talk about my condition.

I've also heard of individuals who keep a list of their meds and an explanation of their condtion at their doorway in case of emergency. My husband is really well briefed, so I haven't done this - but probably should!!

Hope everyone is well.
~Kathy

Quote:
Originally Posted by ras1256 View Post
OMG - you read my thoughts!! I was just thinking that early on, it was recommended that I get a bracelet identifying me as myasthenic. I was still in denial then, but just was considering getting that done!
Scots Kat is offline   Reply With QuoteReply With Quote
Old 02-25-2009, 04:07 PM #15
erinhermes's Avatar
erinhermes erinhermes is offline
Senior Member
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
Thumbs up What a great idea!

Kathy ~ what a fabulous idea! Since there are certain meds we cannot take it is also very, very wise!

I keep a list of all my meds and my old bracelet from the hosp with MG written all over it - but I will try and get one ASAP!


Erin
Quote:
Originally Posted by Scots Kat View Post
Hi ras1256,
I wear a medicalert bracelet and now carry a steroid identification card. I've never had to use either, but I guess it's just another precaution. If nothing else my medic-alert bracelet has been the start of many conversations, especially with my pupils - kids are very inquisitive and I otherwise probably wouldn't talk about my condition.

I've also heard of individuals who keep a list of their meds and an explanation of their condtion at their doorway in case of emergency. My husband is really well briefed, so I haven't done this - but probably should!!

Hope everyone is well.
~Kathy
__________________
Erin
.
erinhermes is offline   Reply With QuoteReply With Quote
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
Hello, I have some questions dreambeliever128 Fibromyalgia and Chronic Fatigue 2 05-22-2008 10:28 PM
New with questions! KSLady Autoimmune Diseases 1 01-11-2008 08:28 PM
Ada and Vic.. questions about pc Sandel Reflex Sympathetic Dystrophy (RSD and CRPS) 4 11-01-2007 05:51 AM
questions archgoddess Chronic Pain 1 08-17-2007 02:41 AM
Some questions..... dabbo Sleep Apnea & Sleep Disorders 6 05-25-2007 11:49 AM


All times are GMT -5. The time now is 10:40 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.