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


advertisement
Reply
 
Thread Tools Display Modes
Old 08-12-2009, 10:58 PM #11
redtail's Avatar
redtail redtail is offline
Member
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
redtail redtail is offline
Member
redtail's Avatar
 
Join Date: Jun 2007
Location: western australia
Posts: 894
15 yr Member
Default

Hi katrina and welcome!!

Good to see you here, looking forward to getting to know you
take care
Kate
__________________


Outside of a dog, a book is a man's best friend.
Inside of a dog, it's too dark to read.
Groucho Marx
redtail is offline   Reply With QuoteReply With Quote

advertisement
Old 08-13-2009, 05:29 AM #12
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Default Hi Katrina

Sorry Ive been a little slow posting a reply. Unfortunately Ive had a kidney infection for the last few days and today is the first day that Im feeling relatively ok.

Thank you for sharing your story with us. I think you will find we are a friendly bunch and if we can offer any help or advice we will. Many of us are new/ newish or old hands at MG, but we all have one thing in common, we all need support and friendship. I dont know what I would do without this forum.

Love
Rach
rach73 is offline   Reply With QuoteReply With Quote
Old 11-14-2009, 01:05 AM #13
TracyAZ TracyAZ is offline
Junior Member
 
Join Date: Apr 2009
Posts: 17
15 yr Member
TracyAZ TracyAZ is offline
Junior Member
 
Join Date: Apr 2009
Posts: 17
15 yr Member
Default

Hi,

Actually i had my first Rituxan treatment 2 weeks ago, and i go for another one this Thursday. I got raelly weak like 4 days after, but now i'm getting back to my norm. I notice you had your treatment awhile ago, well has it helped you at all? I've had MG for 17 years, and i've never been in remission, plus i'm anti-MuSK positive.

Tracy

Quote:
Originally Posted by Katrina View Post
I have been reading all your postings for about a month now but felt very funny about going on myself but I feel we all have alot to learn from each other, and it also reminds me I am not alone. I have had MG for 19 years now, and yes remission does occur I was in remission for 10years or least off of medication for that amount of time.

Around a year and half ago I started having vision problems followed by facial and eye droop, general weakness, lose of voice and breathing problems. I have been in 3 crisis situations since April but lucky for me no vent.

I currently take 40 mg of prednisone daily, Imuran 150mg daily, Mestinion around 3x daily,pepcid 20mg and throw in some vitamins for good measure. I also have to go for plasmapheresis 3x a week and now after one of those treatments I get 1000mg of solumedrol, talk about feeling like the Pillsbury dough boy.

I never imagined I would be facing this "nightmare" again, but it's back and yes I am angry but I keep going and try not to let anger win. I continue to work as much as FT hours some weeks. I have a wonderful husband and 4 great kids and do have the support of family and friends. I still though hate to rely on others and want to do the most for myself. I don't like not being able to plan anything since you never know how you are going to feel. AND PREDNISONE JUST STINKS.LOL

I will be getting my 3 round of Rituxan in Sept, and I have noticed no one else has made any postings in regards to getting this treatment. What are your doctors views on this?

Finding the right doctors is a definite plus, there is to many of us not getting proper treatment and definitely to many being told it's in your head. I am so glad I have the proper care now. I can only tell you that there is more treatment now than doctors were doing 19 years ago.

I hope you all have a better day and this posting works since it's my 2nd attempt and now I am tired.
TracyAZ is offline   Reply With QuoteReply With Quote
Old 11-15-2009, 09:54 PM #14
maryec's Avatar
maryec maryec is offline
Member
 
Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
maryec maryec is offline
Member
maryec's Avatar
 
Join Date: Apr 2009
Location: Florida
Posts: 291
15 yr Member
Default

Hi Katrina, & welcome!
__________________

Mary
.
maryec is offline   Reply With QuoteReply With Quote
Old 11-16-2009, 01:51 PM #15
rezmommy rezmommy is offline
Member
 
Join Date: Nov 2008
Location: Ontario, Canada
Posts: 189
15 yr Member
rezmommy rezmommy is offline
Member
 
Join Date: Nov 2008
Location: Ontario, Canada
Posts: 189
15 yr Member
Default

Hi Katrina, welcome to neurotalk. A better group of supporting and caring people you will never find. You are so right, prednisone does stink! Take care ~ Melanie
rezmommy is offline   Reply With QuoteReply With Quote
Old 11-19-2009, 01:48 PM #16
Maxwell'sMom's Avatar
Maxwell'sMom Maxwell'sMom is offline
Member
 
Join Date: Oct 2006
Posts: 371
15 yr Member
Maxwell'sMom Maxwell'sMom is offline
Member
Maxwell'sMom's Avatar
 
Join Date: Oct 2006
Posts: 371
15 yr Member
Default

Hey (((((welcome hugs)))))
(((((()))))
Just wanted to welcome you, and hope you post often. Sharing our experiences help us understand so much about this disease.
Much Love
Lizzie
Maxwell'sMom 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 new member kaerae New Member Introductions 5 06-02-2008 02:22 PM
New Member Lindecker01 New Member Introductions 5 10-07-2007 09:54 PM
New Member Lindecker01 Reflex Sympathetic Dystrophy (RSD and CRPS) 3 10-04-2007 12:54 PM
new member beaderpd New Member Introductions 6 10-01-2007 06:55 PM
new member kabbott New Member Introductions 5 10-01-2007 06:36 PM


All times are GMT -5. The time now is 07:08 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.