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


advertisement
Reply
 
Thread Tools Display Modes
Old 09-21-2018, 03:11 PM #1
Kenna Kenna is offline
Newly Joined
 
Join Date: Sep 2018
Location: Edmond, Ok
Posts: 2
5 yr Member
Kenna Kenna is offline
Newly Joined
 
Join Date: Sep 2018
Location: Edmond, Ok
Posts: 2
5 yr Member
Default traveling with MG

I was recently diagnosed with MG. My husband and I had already planned and purchased a trip to Washington DC in October. I am currently taking Mestinon and it is working fairly well, however I still wear out quickly. I will start IVIG next week.

I have read several threads discussing traveling with MG and the reports of worsening symptoms. I am concerned that I may not be able to walk as much as I would like so I am considering renting a small scooter to get around in the museums.

Any input on travel or getting around on vacation is appreciated.
Kenna is offline   Reply With QuoteReply With Quote

advertisement
Old 09-21-2018, 07:57 PM #2
LeeMac LeeMac is offline
Junior Member
 
Join Date: Jul 2018
Location: Cocoa, FL
Posts: 16
5 yr Member
LeeMac LeeMac is offline
Junior Member
 
Join Date: Jul 2018
Location: Cocoa, FL
Posts: 16
5 yr Member
Default

I'm also new to MG and recently flew from FL to CO. I used the wheelchair service at both airports which worked great. I would never have lasted the walk from check-in, through security, and to the gate. I also was able to time my Mestinon doses so that I got peak effect as a arrived at the airports.

I also was able to plan downtime during each day for a rest break.
LeeMac is offline   Reply With QuoteReply With Quote
Old 09-21-2018, 10:46 PM #3
6thCranialNerve 6thCranialNerve is offline
Junior Member
 
Join Date: Jul 2018
Location: NC
Posts: 64
5 yr Member
6thCranialNerve 6thCranialNerve is offline
Junior Member
 
Join Date: Jul 2018
Location: NC
Posts: 64
5 yr Member
Default

Quote:
Originally Posted by Kenna View Post
I was recently diagnosed with MG. My husband and I had already planned and purchased a trip to Washington DC in October. I am currently taking Mestinon and it is working fairly well, however I still wear out quickly. I will start IVIG next week.

I have read several threads discussing traveling with MG and the reports of worsening symptoms. I am concerned that I may not be able to walk as much as I would like so I am considering renting a small scooter to get around in the museums.

Any input on travel or getting around on vacation is appreciated.
The IVIG should help a lot; but you may still lack the stamina to walk a lot. It would be smart to get a scooter and ensure you have a fun time. I have been on Mestinon with breakthrough diplopia. I am now on Cellcept and waiting for my IVIG to get through the specialty pharmacy financial waiver. My stamina is very low; but I am looking for a huge change with my adjusted medication. It will take a while for your IVIG and mestinon to "gel" and for you to reach your peak. Your dosage and frequency may need to be adjusted depending on your tolerance and efficacy. I pray you get a good infusion nurse who knows the drug! I am an infusion nurse and have given tanker trucks full of IVIG. I am blessed enough to know what to look for. Are you taking a steroid?
6thCranialNerve is offline   Reply With QuoteReply With Quote
Old 10-09-2018, 02:39 PM #4
rosepointe rosepointe is offline
Junior Member
 
Join Date: Jul 2018
Posts: 12
5 yr Member
rosepointe rosepointe is offline
Junior Member
 
Join Date: Jul 2018
Posts: 12
5 yr Member
Default

Quote:
Originally Posted by Kenna View Post
I was recently diagnosed with MG. My husband and I had already planned and purchased a trip to Washington DC in October. I am currently taking Mestinon and it is working fairly well, however I still wear out quickly. I will start IVIG next week.

I have read several threads discussing traveling with MG and the reports of worsening symptoms. I am concerned that I may not be able to walk as much as I would like so I am considering renting a small scooter to get around in the museums.

Any input on travel or getting around on vacation is appreciated.
I was diagnosed almost two years ago and we travel a good deal out of the country. Mostly cruising which makes me feel safer as there is medical treatment onboard. I found I did better when we traveled but had a great deal of anxiety before we left. I was able to get my doctors email addresses, just in case medication and directions as to how to take them (steroids) if needed.
Washington has good care if you have a problem.
Sit when you feel tired. Used a wheelchair at airport if you are fatigued and don’t get too warm.
We are leaving for five weeks in Nov and I am already feeling somewhat anxious. Just be prepared and take the time to rest when you need. You can also take accessible tours in many places if you find you do not have the energy to keep up. Whatever you do try not to push too hard and try not to compare yourself to regular people.
Best,
Karen
rosepointe is offline   Reply With QuoteReply With Quote
Reply

Tags
concerned, reports, traveling, walk, worsening

Thread Tools
Display Modes

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
Traveling surfer00 Peripheral Neuropathy 8 07-16-2015 03:51 PM
Traveling with RSD catra121 Reflex Sympathetic Dystrophy (RSD and CRPS) 9 08-16-2010 02:16 PM
Traveling marion06095 Multiple Sclerosis 9 08-29-2008 10:16 PM
TRAVELing with tos olecyn Thoracic Outlet Syndrome 5 07-19-2007 02:20 PM


All times are GMT -5. The time now is 07:17 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.