Your Tips on How to Get Off to the Best Start with a New Specialist

Hi! I feel your neurologist’s attitude and how you were treated totally unacceptable!! I am SO glad you have an appointment at the Mayo and SO glad you have joined Mayo Connect!!! I strongly believe that if anyone will help you it will be a doctor there. I have RARELY met anyone who has not had a good experience and I have talked to many over the years with all kinds of issues. I would certainly suggest that you call the neurology department at the Mayo now about your future appointment If you are being seen in Rochester MN the number is (507) 284-1005. They suggest that you call everyday or so to see if there is a cancellation. When I was diagnosed last year with PD(have you had a diagnosis yet to determine your condition?) my appointment was a month out. I called daily for a few days and got in a week later. I LOVE my neurologist!!!! He treats me with respect and concern and never makes me feel like I am out of line talking about all of the things I have found out about PD by searching the web. I was certainly shocked and frightened when I was diagnosed, but I am now on Levedopa Carbidopa. My symptoms are pretty much under control and I feel quite good. There is certainly help out there for you. My thoughts and prayers go out to you.

I recently changed my lung treatment from a pulmonologist I had been seeing at Northwestern to one at University of Chicago. This is what I learned about medical records and first appointments:

1. Doctors can access your test results on line through an Epic program. If you have a number of tests wrt the relevant condition, I recommend taking a list of the test dates to save the doctor time spent scrolling through multiple test results.

2. Doctor's notes are not available online so you need to obtain them. Frankly if I had seen my former pulmonologist"s notes re my many appointments with her, I would have left her practice long ago. She wrote that most of every appointment was spent on counseling. That"s how she saw my questions re why she was ordering frequent ct scans although the radiologist reported there may be an infection but no sputum tests and whether a newer drug was better for me than the ones I was taking. Sigh.

I used to take my questions on paper but now I have a notes app on my phone. I sometimes stop in the waiting room on the way out and write the answers before I forget what s/he said.

3. While ct scan reports are available online the actual ct scan needs to be put on a disc. Specialists like to go over the actual scan and will put your disc contents into your records for future reference.

4. I hope this doesn't sound crass but doctors are only paid for the time with you. Any fax or letter will most likely be weeded out by his nurse or assistant. The doctor knows you are there because you want help with your medical condition - a condition he or she is very interested in hence the years of specialty training.

That"s all I can think of right now. Hope it helps and good luck on your appointment.

@susan8 I lived outside of Manchester, NH and go to the Boston area for most of my medical care. People up here think that the care in the big city hospitals is uncaring and impersonal but I find just the opposite to be true. My primary Boston hospital is Mass General but I have also had care at doctors associated with Brigham and Women's and Mount Auburn in Cambridge. The doctors I have seen are far more attentive than the doctors here are. Such an irony. I adore Mass General.
JK

Thank you, he has been on carbidopa levodopa for 6 months, aricept for 6 months and amantadine for 3 weeks.
He has lost 30 lbs. since December when first diagnosed so was taken off of aricept, that can cause weight loss. He got the shakes from carbidopa levodopa and amantadine.
I am retiring early to stay home with him. Perhaps it will help?

@contentandwell i also have hearn mass general is a great hosp. But a couple of years ago i had the opportunity to visit my mother who was at a hosp in Albany NY. I was not impressed. Besides the fact they charge extra for everything like phone and tv i thought the nursing staff were kinda of on the rude side. I jave spent most of my time at phoenix area hospitals and have had the best drs and nurses at two of the hospitals i used mostly. Chandler Regional and Mayo. Besides phone tv plus free movies the staff is awesome. Food could be a little better but i like the idea of ordering of a menu and there is quite a selection. So maybe im just lucky but based on my experience west is best in my book. Lol also i have to say there was one exception. I actually was born and raised in Mass and RI. 2 of my kids were born in at the time the new woman's and infants hosp in Providence. They were one of the best hospitals ill have to admit.

@danab it’s great that so many of us feel that OUR HOSPITAL is the best. The one downside of Mass General is also the food. Once when one of the doctors asked me how everything was I told him everything but the food was great. His response was “best hospital, but worst food”!
The nurses are great there too. It’s a “magnet hospital” which has to do with the nursing care. So different from the Manchester hospital I was in a few times before my transplant. I could count the good nurses on one hand, and I had quite a few nurses having had 3 or 4 stays there.
JK

I am 70 and take a statin due to a high plaque burden in my coronary arteries. I've read that 75 is the cut-off age for positive benefits of statins, but since you have been active and fit your whole life, your biological age is likely younger. You don't say what your LDL cholesterol is or if you've had coronary artery disease. This information may weigh on your decision. In your shoes, I'd get a 2nd opinion, especially given your reluctance to start on statins, which do have side effects for a significant number of people.

I like to listen to everything the doctor says, answer their questions, then ask my questions. I expect to be treated with the same respect I afford them. I always like to make sure that they know I am not questioning their abilities, just asking for information or clarification. But if they are dismissive, I will usually move on to another doctor. We pay so much for medical care that I feel I should be able to feel comfortable that my questions are answered. Because I have been my husbands caregiver and we have been at Mayo for extended times, I understand how it should be.

Agree with you totally!

First, it’s @susan62 not @susan8. Thank you for making a note of this. Second, reading your reply I am led to believe that you are under the impression that I believe that the Mayo is the ONLY good clinic/hospital. That is not my opinion. There certainly are other very good ones. Personally though, because of my experience, my husband’s, my sister’s, my mother’s, my sister-in-law’s my uncle’s, my cousin’s and numerous friends, the Mayo has become the only place for us.
Since @cocoon6 is set up to be seen at Mayo, I wanted to tell what my experience has been there and offer support. Again, I never intended to give the impression that it is the ONLY place where one can get good treatment, compassion and respect.