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.

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.

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?

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