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

Reply
 
Thread Tools Display Modes
Old 04-23-2011, 10:47 AM #1
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
15 yr Member
Default

Quote:
Originally Posted by pingpongman View Post
That is really what is strange about this disease. Some treatments work for some and not for others. I guess the toughest thing for me is the mental aspect. I have been very active all my life and now I just can't do it. I haven't driven since Aug so my wife has to do all my errands and I never relied on anyone to help me with anything. It's just a real tough adjustment for me.
Mike
I sure do know what you mean. I am seeing a talk-therapist (psychologist) who specializes in helping people in my situation adjust. I think she's been helpful. It's not that she tells me anything I don't know, but she does help me focus in on what particular thing is really bothering me. Also, she gives me some strategies, like how to manage big blocks of time where I'm not strong enough to do much, but where doing nothing really puts me in a funk. (In case anyone's wondering, the strategies are: schedule some activity, even if it's just for 15 minutes, for the middle of that block of time; and also schedule some time where the "activity" is to do nothing worthwhile at all. For me, scheduling that "nothing" time makes it feel more like I'm accomplishing resting, instead of like I'm accomplishing nothing. But these strategies are designed for my particular problem, which seems to be that too much unstructured time depresses me. She helped me figure that out, too.)

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (04-23-2011)
Old 04-23-2011, 10:36 PM #2
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
15 yr Member
Shari_W Shari_W is offline
Member
 
Join Date: Aug 2009
Posts: 241
15 yr Member
Default

Mike, I agree and am glad that you are going to try plasmapheresis. I hope it works for you so you are able to get some relief that lasts a little while longer than the IVIG did. I have also heard that many people have had success with plasmapheresis. I've never had plasmapheresis because IVIG has really worked well for me, Thank God

MG is very much an individualized disease because it really can affect everyone differently. What really bothers me sometimes is how so many doctors dismiss the possiblilty of someone having MG because they want to put everyone with this disease all in the same box. I just hate to think of all the people in this world that do have MG and could find relief if they could get a diagnosis and receive proper treatment

MG doesn't only affect us physically but also mentally, emotionally and spiritually. I also have spoken to a psychologist before about my mental, emotional and spiritual state due to MG. She was great at helping me to focus on one thing at a time so I wouldn't get so overwhelmed all the time. She also made some very nice relaxation CD's for me and that helped a whole lot because I learned how to calm myself down by focusing on other things such as my breathing etc. Funny how that really does work for me.

I'm glad that your psychologist is helping you too Abby. We all need to learn techniques that can help us navagate through this maze called Myasthenia Gravis.

Gentle Hugs to both of you

Shari
Shari_W is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
pingpongman (04-24-2011)
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
Has this happened to anyone else?? Ms CJM SCS & Pain Pumps 19 03-06-2011 11:11 AM
What ever happened to ..... Alffe Social Chat 2 03-16-2009 11:00 AM
I know What Happened to DM SallyC The Stumble Inn 21 12-11-2008 12:09 AM
Been Away A Long Time - What Happened? Roo1 Community & Forum Feedback 1 08-05-2007 06:34 AM
OK... (again!!) you won't believe what happened to me. Keggy Autism 1 09-22-2006 08:04 PM


All times are GMT -5. The time now is 11:19 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 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.