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


advertisement
Reply
 
Thread Tools Display Modes
Old 11-06-2009, 10:30 PM #11
Nicknerd's Avatar
Nicknerd Nicknerd is offline
Member
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Nicknerd Nicknerd is offline
Member
Nicknerd's Avatar
 
Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
Default

Thanks Jana! I'm trying the extra-chunky, maybe you can give the smooth a shot! lol
Nicknerd is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
jana (11-07-2009)

advertisement
Old 11-07-2009, 10:29 AM #12
DesertFlower's Avatar
DesertFlower DesertFlower is offline
Member
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
DesertFlower DesertFlower is offline
Member
DesertFlower's Avatar
 
Join Date: Aug 2009
Location: Tucson, AZ
Posts: 466
10 yr Member
Smile

Hello!

My MG symptoms started in June 2009 and I am 37.

I hate how unpredictable MG is. Before MG I was very active outdoors, and now I feel so limited.

The uncouraging thing I have been experiencing is this. I started out with MG spending most of my time in bed, and like you said, about 15 minutes of any activity sent my heart racing and I had to rest. Also, I could not focus my eyes at all to drive or even to walk without running in to things or tripping. Now that I have been taking Mestinon regularly and my eyesight has improved I can drive and walk. I have found that I can do activities that use my strength and can do it for a while, maybe 4 to 6 hours (but not two days in a row). If I try to do something like running, or even walking quickly, or jumping, I get tired so fast...within minutes, and then I have to rest for the rest of the day. So, I have been focusing on doing activities slowly, taking my time. I keep trying to push myself and I know that isn't the best for MG, but I so much love to be active. I have been able to work hard enough to get sore muscles and it has given me a little happiness.

I hope you find out what works for you so you can do what you love again.


Quote:
Originally Posted by tysondouglass View Post
The plasmapheresis truely is an amazing medical procedure. I felt so much better, even after having my chest split open. I'm getting to the point where I get so tired I can't stand for more than 15 mins. My heart rate jumps and my breathing gets worse. Then I have to lay down. Tho then there are other times when I can run 30 mins. I hate how unpredictable this is.

Tho now I'm just so tired from everything, school, college apps, etc. I don't seem to have the energy for anything, which being an athelete, kills me. I'm torn.

How long have you all had mg? How old are you guys?

Thanks for all the support guys.
__________________

.
DesertFlower is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Nicknerd (11-07-2009)
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
Blessed Plasmapheresis- My tongue's not paralyzed anymore! Nicknerd Myasthenia Gravis 7 09-05-2009 06:06 PM
Step-by-Step Plasmapheresis....... momma3love Myasthenia Gravis 3 05-08-2009 09:17 PM
Congressionally Directed Medical Research Granted MS $5 Million tovaxin_lab_rat The Stumble Inn 12 10-05-2008 10:18 PM
New Plasmapheresis tx eeyore2 Myasthenia Gravis 4 07-09-2008 01:25 PM


All times are GMT -5. The time now is 04:56 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.