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


advertisement
Reply
 
Thread Tools Display Modes
Old 05-17-2009, 06:37 PM #11
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
xmas 25 xmas 25 is offline
Junior Member
 
Join Date: Apr 2009
Posts: 92
15 yr Member
Default

Quote:
Originally Posted by cricket001 View Post
Erin,
I have never been a big drinker either. Just never liked the way it made me feel...like you, I have enjoyed a glass of wine or even a frozen drink occasionally with a friend...but honestly, I never drunk it all...it either melted or got lukewarm....then it was gross!

I guess that is why I am nervous about the medication...but it has helped me...I have heard of horror stories of people getting "hooked"...but if I continue to use it like the doctor ordered....I am hopeful that it will all be okay! I have not had to take the pain medication at all since my headache has left....but I might need it again after my next IVIG dose in a few weeks!

Oh, do any of you take ambien to sleep? I have heard that it can cause problems with MG patients...I have a prescription from my family doc and I have taken it every once in awhile if I need it....and my neuro never mentioned it when he was going through all of my meds. That is one nice sleeping pill....

I guess you could say...that I am cleaning my home medication cabinet...and seeing what I can and can't take anymore. I am just surprised how my medication schedule is getting more and more complex since I have been diagnosed with MG.

Stephanie
i have had to take potentially addicting meds for yrs increasing in strength and types for another illness. was worried in the beg. so i split percocet and after awhile it was determined i was not an addictive personality since i cut wayy back on the meds whenever i had operations or procedures. yes i worry sometimes but i've seen a pain spec for 20 yrs and there are veryy strict rules to follow. now i take as directed and follow rules and stay relativley pain free[sometimes] i've had all the things done that i can and so far there is nothing else to do for my pancreatitis[which i was born with-many people get it from too much alcohol] so like with the mg-i try to get it before it gets me!!
xmas 25 is offline   Reply With QuoteReply With Quote

advertisement
Old 05-17-2009, 07:54 PM #12
AliceH AliceH is offline
Junior Member
 
Join Date: Apr 2009
Posts: 13
15 yr Member
AliceH AliceH is offline
Junior Member
 
Join Date: Apr 2009
Posts: 13
15 yr Member
Default

Cricket - regarding insurance...

If your husband has an incorporated business, have him look into getting a small group insurance policy with both of you on it - if the company has more than two people it's considered a group policy. Some states (check to see if yours is one) require that if you move from one group policy to another, pre-existing conditions cannot be excluded.

Check with your prospective insurer to see what their requirements are for insuring a small group before you make the jump - our insurer required that we present our previous year's tax information, which included K-1's (I think) showing that we had both made more than minimum wage the previous year from the business, and we had to show that the business had been incorporated for at least two years, I think.
AliceH is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
cricket001 (05-17-2009)
Old 05-17-2009, 10:39 PM #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
Default

Stephanie and Erin - I like you, never liked the way alcohol affected me - I think it's because instinctively we felt the effects of MG, which I know on me started long before it MADE me take notice!

Stephanie, I have a job I just love too. The people are so wonderful and my job is challenging and rewarding. I'm fortunate that EVERYONE I work with have been willing to jump in and cover for me while I've had to be out, and my boss allows me to set my schedule when necessary. They have set me up with a laptop loaded with the programs I need to do at least part of my job from home.

If you have a job that you can do any part of from home, maybe in the evening when things slow down a little, perhaps you can work something out until you get your MG under control again.

Take them information about your disease, and be real honest in that you can't say how long it will take, but that you love your job so if there is any way you can work a shortened schedule for a while to help you to recover, you would love to do that.

If that doesn't work, can you have your 14 year old give you a while when you first get home to kind of switch gears? Maybe take an hour to read and unwind a little before you have to put on your mommy hat? Naturally, your children will want some attention when you first get home, but then if you can lock yourself away for just a little while..... I feel for you! I was fortunate that my MG didn't hit really hard until my kids were 16 & 18. But my husband does have his own business that I do the books for - needless to say, everything didn't get paid on time when I was struggling, and the books fell behind for a while.

Another thing that really helped me was seeing a psychologist. She gave me some very helpful tools and suggestions about how to deal with my emotions, anxiety, and concerns of the future when I had my first serious bout. It's surprising sometimes how they can simplify something we make so difficult. I know it's another "appointment" to pile on, but can be well worth the time and money!

As for the drugs, the pharmacists are definetly the best source for finding out which drugs can interact and the addiction factors. It sounds though like you would recognize if you start wanting them when they're not really needed. I was on Actique suckers (Phentenyl) for breakthrough pain from my neck for a while. LOVED them, but figured out I started thinking "oh, my finger hurts a little - I'd better get an sucker" and that was the end of them! I won't get another script for them - ever (well, if they said I was terminal and it would be in the next couple of months I'd beg for them! HA HA)

Good luck, I hope you find some good resolution that you are comfortable with.

BIG hugs - I know you need them right now!
__________________
Becky
ras1256 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
Medication question, SOS nothing helps acerina85 New Member Introductions 8 12-11-2008 03:20 AM
Question about medication increases. jcitron Parkinson's Disease 4 08-01-2008 11:30 PM
Medication question-Trihexyphenidyl labar914 Parkinson's Disease 7 08-03-2007 09:23 AM
Jim S Please, & Anyone, Medication Question? Feebs Spinal Disorders & Back Pain 5 10-02-2006 11:38 AM
Medication Question Todd Parkinson's Disease 4 08-27-2006 02:26 PM


All times are GMT -5. The time now is 07:55 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.