Quote:
Originally Posted by Kenna
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.
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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?