I also have to drive a long ways for Mayo clinic trips and have asked the same questions myself. When I arrived and went to my appointment the Neuro actually specialized in MG which was nice. She adjusted my medications her way and is currently getting me set up for the thyectomy. I would overall say I would rather deal with Mayo then any other hospital it seemed to know way more about it then my local neuros

I've never been to Mayo so can't offer an opinion. Were you referred to Mayo? If so, did the referring Dr. explain the reason for the referral?

I'm not quite sure why they'd want to keep you for 5-7 days. You've got your dx so they wouldn't need to run a ton of tests, and any meds would take far longer than that to kick in (or they could set you up for IVIG or PLEX closer to home). It's definitely worth a call to see what the neuro thinks - ask for his nurse and lay it out for him/her.

At this point in time, since my symptoms are and have always been purely ocular over 60 years, I don't think I'm a canidate for IVIG or Plex because Mestinon works fine for me. Having dealt with it for so long I have learned what dosage I need, etc. until it goes into remission and since there's really no cure I'm just wondering if there would be any value in Mayo's neuro. I was not impressed with the neuro that I saw here even though my city is a large regional medical center. She was probably not much older than 40 at the most and has probably not seen that many MG patients in her lifetime.

My neuro suggested sending me to Mayo about a year ago. At the time he was going through the doubts because I am seronegative, blood work (various and numerous), emg, ncs, muscle biopsy all negative for anything. CT positive for thymic hyperplasia with thymectomy 8/2010. He diagnosed me initially by symptoms, a photo of ptosis and response to treatment. He would really love to have something positive to "hang his hat on".

My question for him at the time sounds like your question now. I asked what Mayo would be able to do that he hadn't already done. I also asked him what he would do if Mayo said I didn't have MG. His response was that he would continue to do what he is doing and treat me for MG. We agreed that the trip to Mayo was unnecessary.

I agree it would be a good idea to call and discuss this with your neuro.
Cathi

No records are available of my initial dx in 1952. Across the years I've had intermitten periods of time when it came out of remission during periods of stress. About 25 years ago they did the tensilon test on me and confirmed it was MG. I understand they don't do the tensilon test anymore. (I'm not sure why??)
I've never had any of the other tests I see mentioned here. Maybe since my symptoms have never moved beyond ocular they don't see more testing to be necessary unless it should generalize. With all that said I'm leaning toward not going to Mayo. I do have an appt. in October at Kansas University Med. Center. They work in conjunction with the MGA Foundation in Kansas City. That's only 3 hours away.

I was referred to Mayo because of sero-negative test and slightly abnormal SF. After spinal tap & more tests than I've seen in my life, Mayo also couldn't be positive it was MG. It took the first week plus 3 more trips to get everything accomplished. Since they don't have more meds to offer and no cure, I'm not planning to go back. A provider who works with the MGF would be ideal! BTW, my first neuro said she won't do Tensilon test outside of a hospital with a crash cart next to the bed. After that, I decided I didn't really want one. = ]

I am 6 weeks into Myasthenia Gravis and have been treated at Mayo Clinic for that time. I retired from Mayo as a scientist after a career there.
Mayo is excellent with dealing with folks who have difficult problems. If your disease is controlled, and you are doing well, I don't imagine the visit will change anything. If you want a second opinion on what to do that could be helpful too.
I do have a good neurologist, K. McEvoy, who is helping me work through the prednisone/diabetes issue that is looking much more likely if I increase the dosage.
Mayo generally is conservative on most treatments. My mother goes there every few years and mostly they cut back or remove medicines that her local doctor has added and left on after it may no longer be needed.
My own experiences on Myasthenia are on my blog at
Riverroadrambler.blogspot.com mixed amongst other postings over the past 6 weeks and includes my interactions at Mayo.

Good Luck.

I just got back from my first trip to Mayo....I was diagnosed in March of 2012....I am Seropositive and was sent up there for more of a second opinion. I know I have MG....the Nuero up there was somewhat helpful....I stayed at the Best Western Soldiers Field....Very nice people...I was there for 6 days (5 nights) and my bill for the hotel was less than $600...they have a shuttle that goes back and forth all day to the Clinic....and it will even take you around Rochester...all for free...like if you need to go to the store and pick up some munchies or have some time and want to go to the Apache Mall....or whatever, it would even take you to the movie theater to see a movie if you wanted....

Thanks to all of you for your replies. I tend to agree with "StuartsMom" that since they have no cure and no new meds to offer I think I'll just wait and go to Kansas City in October and meet with a neurologist there who sees a lot of MG patients.