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Looking for support. Newly diagnosed with Nesdioblastosis and meet my specialist in two weeks at Mayo in MN. I have tried acarbose, it’s not working. I’m not a candidate for the digoxin with a heart pacemaker. How long will all of the testing take? Days? Weeks? Do we stay at Mayo the whole time? We are 4 hours from Rochester where the clinic is. What does the Mayo protocol look like for this? Our lives have completely turned upside down since I fainted a little over two weeks ago and I have many episodes all day long. My husband and I both had to go on leave from our jobs. 911 has been here so many times I have lost count. My face, lips and tongue are constantly tingling and numb. I’m losing hope we’re going to get to the other side of this in one piece.
Replies to "Looking for support. Newly diagnosed with Nesdioblastosis and meet my specialist in two weeks at Mayo..."
@danelle9192, I hope you saw the helpful post from @ahtaylor. If I've calculated correctly, your appointment at Mayo Clinic in Rochester is coming up soon. As you prepare for your time in Rochester, you may find some of the discussions here useful:
- Visiting Mayo Clinic Support Group https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
As @ahtaylor. mentioned, testing can take up to a week. Many of the hotels offer patient rates and are flexible if you need to shorten or lengthen your stay. Mayo Clinic free Concierge Services can also help answer questions regarding accomodation, transportation, services and even help with downloading the patient portal.
Concierge services at Mayo Clinic in Rochester, Minnesota
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
Have you signed up for Mayo's patient portal? Are you seeing your appointments start to appear?
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@danelle9192 in my experience, the first round of testing took a week. Mayo coordinates the appointments and we do stay in Rochester for the week. Every case is different so difficult to say what your schedule may be. The Mayo Clinic app is very beneficial. I am happy to help in anyway I can. Best wishes!