@johnbishop Great advice. I went way too long trying to get a diagnosis locally. I now know if they don't figure things out within six months that I will head to Boston.
At one point, prior to transplant, I was in the hospital with problem blood counts. In diagnosing what was causing them they left no stone unturned, just to be sure it wasn't more than the cirrhosis. A group of five or six doctors would come in and go over everything! I felt like I was a patient on the older TV show, "House".
I wish Boston was close enough to have my PCP there, but you need to leave about two hours travel time during the day.
JK

Thank you JK (@contentandwell), I am fortunate to live within a short driving distance of the Rochester Mayo Clinic. I loved the TV show "House". Don't you wish every doctor was a real life House with all the answers and knowledge...:-) Truth is we know our body and how we feel better than most doctors so it's important that we make sure they know also by asking better questions and communicating better with them. We are our best advocate.

Someday maybe all this technology and information sharing will give doctors the tools they need to help us all - wherever we live.

Hoping you have a great day. John

@johnbishop John, you are so fortunate to live so close to such an amazing facility. Although I do not live close enough to Boston to have my PCP there I am happy that I am close enough to be able to go there for anything more specific. I regret so much not going there sooner so that the mystery of what I had could have been solved, it was difficult to go for so long not knowing what was wrong, waking up every morning afraid that I might have an HE episode that day. Thankfully though, at this point it is all history and I am doing fabulously, only glitch being side drug side-effects.

"House" was great, one of the shows I miss.
JK

Hi John
Thanks so much for your response. I truly appreciate your insight and suggestions. I will look at the links and I am pursuing getting an appointment for my daughter at the Mayo. There are a lot of physicians at Mayo - I am wondering if anyone of the site has any suggestions of a good physician to start with or someone that they have had good luck. Thanks again and have a wonderful holiday weekend!

Michele

Hello Michele (@micheledeville),

I think when you make your appointment they will setup a series of appointments based on the symptoms you tell them so that they can help you. I am tagging a few folks that may have a better insight and can give you some information on what to expect with your visit/appointment - @cynaburst @dawn_giacabazi @IndianaScott @katemn @kariulrich @kdubois @rosmarya @colleenyoung @jamienolson.

Please let us know when you get your appointment set up and you have more questions.

John

Hi Michelle,
Here are a few links that may help you with any questions you might have about an upcoming appointment at Mayo Clinic.

A typical visit:
http://mayocl.in/2r3YzUw
Frequently asked questions about visits to the Rochester Mayo Clinic:
http://mayocl.in/2iqtsjl
Sharing Mayo Clinic - Stories from patients, family, friends and Mayo Clinic staff
http://mayocl.in/2rolpJp
John

for @micheledeville When I went to to Mayo-AZ, things were very different. I went there having spent many days and nights trying to learn as much as I could about amyloidosis, having had a MD give me what he called an "informal" Dx. I at least had a place to start. Anyway, I was at May four (4) months, and it was only in the last few days that amy... was given any credence. The docs spent the rest of the time looking for any other excuse they could find for me having the symptoms and signs. They even sent some blood and biopsies to Rochester. The found a few things, but nothing that would excuse the situation. In the last few days the docs showed me a list of cancers, but nothing which would impact the amy. Only on the last two or three days did I get to see a hematologist, who knew next to nothing about amy. Only after I had been back home for a few months did I get a report from Rochester that said "We cannot rule out AL (light chain) amyloidosis, Gelsolin, Cystatin-C, Apolipoprotein, or other systemic, primary, familiar" amyloidosis diseases. In other words, the waffling-around by Mayo for 90% of the visit cost me several thousand dollars, with very little in return. So I say, be careful. You have to protect yourself at all times.

Thanks for the tag, John.
@micheledeville, John has given you some great things to read about getting an appointment at Mayo. Should you wish to inquire about an appointment, please fill in the online form here: http://mayocl.in/1mtmR63

There are several great discussions in the Visiting Mayo Clinic group about getting your first appointment and preparing for your visit. Check them out. Ask questions of people who have been there:
- Visiting Mayo Clinic http://mayocl.in/2bGLTKj