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

Reply
 
Thread Tools Display Modes
Old 12-06-2012, 12:37 PM #1
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

I agree with Alice MD: Reading your post, I think you shouldn't be working full time.

I'm always shocked by MGers with significant symptoms STILL being able to work!

I continued to work for about a year after diagnosis. During that time, I came home EXHAUSTED and was only able to SIT in the recliner..............falling asleep by about 7 PM. I would stumble to bed and not even turn over during the night. Weekends were also spent RESTING.

One of my favorite docs told me to "Listen to my body!" He was 100% right, IMHO. If you don't pay attention, MG will kick you in the BEhind!!
__________________
~jana
jana is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (12-13-2012), Lesmom96 (12-06-2012)
Old 12-10-2012, 07:35 PM #2
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

Quote:
Originally Posted by jana View Post
I agree with Alice MD: Reading your post, I think you shouldn't be working full time.

I'm always shocked by MGers with significant symptoms STILL being able to work!

I continued to work for about a year after diagnosis. During that time, I came home EXHAUSTED and was only able to SIT in the recliner..............falling asleep by about 7 PM. I would stumble to bed and not even turn over during the night. Weekends were also spent RESTING.

One of my favorite docs told me to "Listen to my body!" He was 100% right, IMHO. If you don't pay attention, MG will kick you in the BEhind!!

Lesmon, I am so sorry you are going through this. I myself am also very depressed. Having all the symptoms of MG and still no diagnosis or treatment yet. I agree with you that the worst problem is the not knowing when or where the symptoms will suddenly get worse. Last week I was at work and felt good all morning. Then at lunch while reading the news on my computer my head suddenly dropped. When I tried to stand up after lunch, I could hardly move my legs. That is the worse I have ever been.

Jana, your situation sounds exactly like mine now. I go in to work early and get out early so sometimes I am even asleep in the recliner by 5 pm. Often, I am so exhausted, I have to fall asleep for a few hours so I have enough strength to climb the stairs to go to bed. I keep thinking "How long can I keep this up?" I have 6 years until I can take early retirement. But I am too afraid of the financial consequences to think about disability and they have not even definitively diagnosed MG yet. I do not want to lose my home.

kathie
cait24 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
AnnieB3 (12-13-2012), Lesmom96 (12-11-2012), StephC (12-11-2012)
Old 03-12-2013, 10:02 PM #3
cait24's Avatar
cait24 cait24 is offline
Member
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
cait24 cait24 is offline
Member
cait24's Avatar
 
Join Date: Sep 2012
Location: Newtown, PA
Posts: 709
10 yr Member
Default

Quote:
Originally Posted by cait24 View Post
Lesmon, I am so sorry you are going through this. I myself am also very depressed. Having all the symptoms of MG and still no diagnosis or treatment yet. I agree with you that the worst problem is the not knowing when or where the symptoms will suddenly get worse. Last week I was at work and felt good all morning. Then at lunch while reading the news on my computer my head suddenly dropped. When I tried to stand up after lunch, I could hardly move my legs. That is the worse I have ever been.

Jana, your situation sounds exactly like mine now. I go in to work early and get out early so sometimes I am even asleep in the recliner by 5 pm. Often, I am so exhausted, I have to fall asleep for a few hours so I have enough strength to climb the stairs to go to bed. I keep thinking "How long can I keep this up?" I have 6 years until I can take early retirement. But I am too afraid of the financial consequences to think about disability and they have not even definitively diagnosed MG yet. I do not want to lose my home.

kathie

I was searching posts on plasmapharesis trying to learn what to expect when I found an old posts by myself that haunted me and needed to respond. I know I am probably violating some forum ettiquette. But the post of what I dreaded only 3 months ago has come to pass. I do not think I can continue working until I get some relief from MG treatment. The doctor agrees and I will be going out on disability for a while. I hope not permanently. I guess my body could take the pace for a while but MG has wore me down and I need to take a rest. Shortness of breath is the main concern. It is happening more often with less physical exertion and I cannot risk it anymore.

kathie
cait24 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
A Blessed "New Year" Sunday Morning! Dealing with Faith and Adversity NeuroNixed Craig The Stumble Inn 2 01-02-2011 09:30 PM
Dealing with those who "have an allergy to dogs" OneMoreTime Service & Support Animals 3 02-20-2010 07:13 PM
"Normal" Blood sugar levels can = damage Alkymst Peripheral Neuropathy 16 09-10-2007 06:46 AM
MS Damage Also Found In "Normal" Brain Tissue lady_express_44 Multiple Sclerosis 4 10-04-2006 09:22 PM
Multiple Sclerosis Damage Also Found In "Normal" Brain Tissue pantos Multiple Sclerosis 1 09-19-2006 07:21 AM


All times are GMT -5. The time now is 06:34 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.