I would take it slow and talk to your neuro about your plans. With MG I get easily tired and recently took a trip 13 hours by car (one way). I got to rest most of the time because I didn't have to drive. The excitement was good stress, but it wore on my MG. Also, it's hard to eat right - lots of protein and veggies when you are traveling. There is a lot to think about. This sounds exciting. I hope it works out for you.

You do keep living your life with MG. I have learned to enjoy little things in life. But, I also LOVE to have fun.

I am sure there will be more comments to follow.

Hey there Ellie..First off sorry about Mom! I understand I lost my Mom to cancer some years ago and it was very hard....Nice that you are planning trip in her memory and know you would hate to miss it..first your right talk to your neuro.....Ill tell you of my first experience with traveling about 5 months after my diagnosis...Went to Vegas..Did ok but was not ready at all...I too love my wine and having fun but found I couldnt keep up very well and did spend alot of time resting but was not a bad trip....But wish I had waited....I to love to travel and did alot of it and have now started to do more depending on how Im feeling...Sometimes not quite the same as it was but Barb is right you do keep living your life with MG there will just be restrictions and we learn to enjoy what we can do...We are all different and some can do more than others..I know I will keep trying to do my trips whenever I can and in your case see how you feel and what your neuro says..If ok go with it and if you have to rest a bit so be it....You still can enjoy....It does sound exciting and I too HOPE it works out for you....Good luck and Hugs

I would definitely not go on trip.
In the beginning we don't know for sure what leads to what. I was in hospital for 6 weeks early in my disease.
Now that I am stable I get sick every time I take a trip,
Even a short week end trip to Detroit conference had me home early sick.
Conference a year ago.....sick.
I would never leave the country.
Went to Florida this winter and had a onderful time for 4 days. I got so week I had to go back up on prednisone. Always a set back when I travel.
I would ask myself....would I want to be I hospital where I am going?
Sorry to be a downer....never worth the risk.

PS wanted to add after seeing Anns post I definately check or go to places if I can that have good hospitals etc.....i agree would you wanna be in a hospital where you are going? Not to be a bummer either but important....Thanks Ann for that reminder!!! Not saying anything would happen but would wanna be prepared...Again good luck!!!

I thought the same as all of you, as much as I would love to go, I'm just too nervous about being out of the country right now. We are all trying to comprehend what this dx means. I try to keep telling myself just because it has a name doesn't mean how I feel should change, but that's not true either because with the name came more lots more information, etc.

Sleeping has been so hard lately... my mind is flooded with questions, concerns, scenarios, etc etc. The more I learn the more questions I have.... just tons... what about insurance, do I not risk ever leaving my current job and loosing insurance, what if I can't work, how will this impact my kids..my husband, should we stop remodeling and save, should we move close to my daughter when she goes away to college, how often will have to see the Dr., will I get fat, should I stop wearing heels to work, how do I build muscle without fatigue, and it goes on and on and on all night long.

I know this is all normal but a few more hours sleep sure would help me too.

Elle, just take one day at a time. I work full time and I take naps on my break. Remission is possible. I understand how overwhelming this is. MG is listed as a disability with SS. So, you have rights. It sounds like you still have a lot of strength. Getting treatment as soon as possible will slow down the progression. HUG!

Hey Ellie....Barb is right start your treatment, take one day at a time...start your treatment asap..Things will improve Im sure....I still have problems sleeping after 5 years of being diagnosed..Im a very anxious person and believe me stress affects MG also so try and relax at night and get some sleep....It is overwhelming with all that can go on but think positive..i worked a very stressful job for like 3 years after being diagnosed and still might be trying it but they retired me!! So i was able to get my small pension and SS disability....So there are options.....I have other issues going on besides the MG so pretty stressed and that aggravates the MG so take from me try and relax as much as ya can....See how treatment goes, you will know what you can and cant do!! Dont over think it see how treatment goes.....You can do it!!!! Keep us posted.....Big Hugs

There are ways to adapt. We spent 3 weeks in Hawaii in January July is a very bad idea to visit the tropics. Make you trip for winter months.
We are not experts on you. You and your neurologist know your body best. Make the decision with him.
I found I did a lot less active things and more sight seeing by car or bus. I still had a fabulous time. I sent my husband off with our friends to swim in the ocean while I set in a tide pool.
Your memories of Mom become more dear. She will be with you always, home and on vacation. Its been 30 years and I still will think how much she would love what I am doing and where we are visiting. Her love and the love of your Mom will surround you always.
Blessings
Dee

I dont know Elle, sometimes the best decision is no decision, why dont you talk to you neuro and see. Trust me I have sufferred, like you and I travel with my job 2-3 nights a week in hotels etc. Somehow, you find a way to make it work and get the rest you need. Maybe you will skip the hike and meet up under an umbrella by the pool.. maybe you will zipline, maybe you wont, take it one day and in this case maybe one activity at a time. At my worst, i took my 8 yr old to 6 flags.. really probaly not my smartest move but i rode the benches, by that i mean.. i went from one bench to another and we left earlier than usual but i still got to go and everyone worked with me to make it work.. exhausted from walking the next day so i had a down day...

my advice.. talk to neuro and see what he thinks, just keep reminding yourself you dont need to participate in EVERY activity like you used to... ive learned there is a some good parts about being a spectator...

Sorry to hear about your mom and your diagnosis. Like everyone here, I think you should confer with your neuro, keeping in mind that even the experts don't fully appreciate the range of symptoms we experience. Relaxing at the beach might be nice, but even then it is important to consider heat intolerance as it relates to MG. Also, it is important to consider each activity as it pertains to your safety, or lack thereof, when deciding what to do daily. I personally would not leave the country with a new diagnosis, as learning to cope with MG takes time and is different for each person. Best to you on your decision.

Hi Elle, I can't say what is best for you, but I can tell you my experiences with travel. I have had MG for 3 years and only take Mestinon so far. During that time I have traveled a lot. My biggest trip was to Vietnam (20 hours each way) where I spent almost a month. It was hot and humid, but I managed to sight-see and visit family and have lots of fun. I have also been to Mexico, Alaska, Kansas and Missouri several times each, visiting family or vacationing.

Every time I fly, I ask for a wheelchair when I make my reservation. I use it whether I need to or not because that saves me energy for something besides walking around airports. The airlines I have flown have brought the wheelchair to me at check-in and have met me plane-side at each stop and taken me where I needed to go whether to a connecting flight, the snack store, the restroom, etc. Also in the airport you don't need to know your way around because the attendant pushing your wheelchair knows where your gate is and will get you there by the fastest route; you also get to go to the front of the line for security, customs and boarding. This was a Godsend in Hong Kong and Vietnam airports. The person(s) with you get to come along too! The attendant will also take you to get your luggage and stay with you until you get on your shuttle or someone picks you up. It's a great service and it is free -- obviously tips are welcomed.

If going to an amusement park always get a wheelchair so someone in your group can wheel you from ride to ride. I recently did this with my family - 7 of us and it worked perfectly for me. You all go to the front of the line for most rides. It saves time and energy. I could not have done the Disneyland trip without the wheelchair. On trips my motto is "ride don't walk; sit don't stand." I need to rest more on trips, so I go to bed early and take naps when needed, find a place to sit when standing in line at a restaurant,etc., stay in the shade, be smart about conserving energy for the fun stuff! If you feel embarrassed to use a wheelchair - don't be embarrassed! No matter how young or old you are, people get out of the way and are very kind to you - so that saves time and energy.

No matter where you go take a bottle(s) of water along. I never drink alcohol because it is dehydrating and makes me feel tired and weak in mind and body. Entertainment such as movies, plays, concerts, exhibits, galleries, museums, etc. that are inside air-conditioned buildings are good choices too.

I am not saying I never get tired on trips. Yes, I get tired and I am not able to do all of the things I had been able to do before MG. But I am thankful for all I can do.

As far as hospitals in other countries, take a look online and see what you think. My daughter-in-law has MS and had to be hospitalized in Thailand for 10 days. She had top-notch care by world-renowned neurologists. When I first had MG symptoms, I went to UC San Diego and had testing, but no diagnosis. I got tired of appointments being cancelled and went to a neurologist in Mexicali, Baja, Mexico. He gave me a diagnosis of MG from muscle tests in his office and hearing about my symptoms. He then sent me to the lab for blood tests and CAT Scan - MG was confirmed. My MG has subsequently been confirmed by my neurologists in Santa Barbara, California.

I can't tell you to go or not to go on your trip. I can only tell you I have thoroughly enjoyed everywhere I have gone. I am a relaxed traveler and don't worry too much. I expect things to go right and when they don't, oh well, off to plan B, things eventually work out. There have also been times when I planned too many trips back to back and had to cancel. Cooler weather is better than hot, but I have done both. You know your body best, listen to it -- your body will tell you what you can and cannot do. We are all different in how we react to MG and to treatment. Check out the hospitals where you are going and whether you decide to stay home or go by all means live your life! My best wishes to you for your journey wherever it takes you.