Hello everyone! My last post in July said I was headed to Mayo Clinic at their Rochester, MN campus in August. My wife and I spent three weeks in Rochester with me going to appointments. I can't say enough positive comments about Mayo, the doctors and staff, and the residents of Rochester! After numerous appointments, tests, and changes in appointments, the final result is a primary diagnosis of Idiopathic Hypersomnia. At first, I was was disappointed that Mayo doesn't recognize Epstein Barr as a chronic condition. However, their explanation made sense to me, and I am willing to accept their idea. I had been previously diagnosed with IH,
But Mayo made me feel better about my doctor and his treatment. Mayo doctors also didn't confirm some other diagnoses from my local doctor and took me off five medications immediately. I am feeling much better since I stopped taking medications that my body didn't need. The Mayo doc also sent my local pulmonologist his recommendation to revamp my medication dosage and/or change my medication to allow me to be able to stay awake better. Treatment for IH is just treating the symptoms...stimulants to keep me awake during the day. I see my local pulmonologist next week. Mayo also found a small issue with my pancreas, which I will be contacting a gastroenterologist locally for that. So do I think EBV is real? Yes! I also blame that virus for my IH, which the Mayo doc said was possible but it can't be determined. I still have a little brain fog and pain, but nothing like it was before my Mayo visit. I recommend anyone who has ongoing health issues to make a trip to Mayo Clinic. Insurance is accepted, and lodging options vary according to your budget. We opted to take our travel trailer because of the length of time we would be there. Autumn Woods RV Park provided us with everything we needed. I am still curious how this plays out. IH isn't curable, but it is manageable somewhat. I will be keeping up with everyone on here, and I appreciate everyone's concern and prayers during my trip.