Booked Mayo for My Son - Now Frightened

Hi @devsmaj, I wanted to check in and see how you are doing. Did you get your appointment sorted out?

Hi my son is 27 years old and has been mayo clinic patient for 24 years. He has rare genetic disorde diagnosed at mayo clinic. Nobody else could diagnose him. S I have been through so many mayo clinic departments. What you get is the best doctors in multiple specialties that talk to each other. So I think its good to come down and go through the consultations and testing. Sometimes the answers take awhile to emerge. But they don't give up even after you have gone home. When you are a patient at mayo clinic you are automatically involved in research too because all the doctors are involved in research. They might talk about your case at a seminar to ask for help. If you don't get the answer the first time then plan on making a follow-up appointment. There's often follow-ups at regular intervals. I follow-up in endocrinology, ophthalmology, and sleep medicine. My son has follow up in ophthalmology, cardiology, and medical genetics. I do think they try to relieve symptoms and stabilize patient suffering. Then they try to heal. If they can't heal then they treat the symptoms to increase quality of life. You can certainly expect that they follow the gold standard in whatever treatment they provide. I also recommend some of the longer stay hotels that have a weekly rate. Most small hotels share a shuttle service to Mayo and St. Marys. Get a room with a kitchen and cook your meals. This will cut down your costs. I often stay overnight when I have follow up and I always get moderate priced rooms.

I completely agree. My 24 year old has CG, we spent 12 days in MN, and I cannot say more about the high quality treatment, thoroughness, and deep care each dr gave us. I think we saw someone in every department but worth what was to be a 5 day stay to a 12 day.

iWhat are his symptoms? Hospitals in Boston are suppose to be good if you can stand Boston people.

@devsmaj l know it's hard when you can't get the answers you want and you keep pursuing but the Mayo Clinic was the best place l have been too. And l have been fighting with medical conditions for awhile. Matter affect l just came back it will be a week tomorrow. I saw the gasternologist and he was the one that told me about what was going on while my doctors was misdiagnosing me. Matter of fact all the diagnoses the mayo clinic ruled out in my home state they are all of a sudden coming back. And they can keep all my diagnoses straight. I go to the doctors office or maybe went to the hospital the doctor discharges me and it says one thing and then they put something different to my insurance. I will question the doctors and they can't answer. This has even been done at the hospital my daughter works at. So l think you really will like the Mayo Clinic. The doctors are concerned about the patient and the make sure you understand. The doctors l went to never rushed me out. I pray you get the help and answers for your son and especially feel peace.

I would be nervous if I I had to come up with 7000.00. Have you heard of medium accurate ligament disease support group (MALS) on Facebook? Many of us with this rare condition have found ourselves in the same situation. I personally would cut the chase and get a local gastric doctor for a referral to a vascular specialist and have an angiogram done. If I would of known about MALS years ago it would of saved me a lot of money and peace. An angiogram is the only way to diagnose this. I am not a doctor but I would highly suggest check out this group and weigh all options before forking over all that money. Good luck with whatever you do. I hope you get some definate results so you can go on from there.