I've been to Mayo in Rochester several times for complications from surgeries performed elsewhere. The doctors, nurses, and staff are excellent. I still contact my one surgeon every 6 months. They review CT's of my chest that I've had done locally to check the titanium plating on my sternum for free. They go out of there way to care for you. Plan to stay there for at least a week for additional testing. The best hotel we've stayed at is the mayo Mainstay suites across from hospital. Free busing from there to clinics. And we always use Mayo Rochester Shuttle from Rochester Airport. Make reservations before you go. Much cheaper than a taxi or Uber

Hi Suzette! I am also a psychotherapist (LCSW)! I have had a lot of confusion with !my diagnoses... I talked about my symptoms to my doctor for a few years before I was sent to an ENT. My tremors were thought to be familial until I was scoped. The ENT diagnosis was for cervical dystonia. I was referred to a neurologist who ran tests and added a diagnosis of Parkinsonism. She indicated that my brain tumor had not grown much... WHAT?! What brain tumor? Apparently in 2007 a different neuro found a brain tumor that I was never told about before. Then, while scrolling through my chart I found my diagnosis of Parkinson's! Again, no word to me.

I have learned more on this platform than anywhere else. There is no doubt in my mind that I have Parkinson's. I think maybe because I get adverse reactions from LC treatment, it's considered atypical and therefore, Parkinsonism instead of Parkinson's? That's just my thoughts. I do not get answers from my doctors. If anyone has anything to add or correct me on this, I'm listening.

I wish you the best! I hope Mayo Clinic can help. If they do, I may head there next.

For me, I needed a diagnosis. I am not good with unknowns. Most people have a fear of the unknown - I'm no exception. At my age, I needed to plan and get a lot of things taken care of. I also research and implement various ways to be ready for what may be, along with tips, diet, etc. to assist myself.

Before knowing, I felt nerve-wracked. Once I had a firm diagnosis, I relaxed and began going in a positive direction to do everything I could to help myself. I now know what to expect, for the most part, and I'm ready for it.

Obviously, I do need to change my care team.

Please let us all know how it goes at Mayo! Best of luck to you!

SuzetteClark you stay strong. Life throws things at as left and right we can use the inner strength we have developed throughout our lives. We can also welcomely rely on friends for support. No strings attached just friends helping friends. Time will deliver the answers with the help of the neurologists and others the answers will come. If you need to talk let me know or reach out to any of your other friends on the site. Together we take a tough situation and shave the edges to smooth it a bit.

Suzette
Albert’s overview and praise is right on the money with his explanation of Mayo Clinic.
My wife started noticing new health issues two and a half years ago. The first sign was her balance and gait, then incontinence followed. The symptoms continued to progress , and she started to have more difficulties with short term memory and everyday activities. In Southern California are many excellent medical facilities. After connecting with many with different expertise, numerous testing, increasing medications, we still had no definitive answers. Our neurologist specializing in movement orders finally gave a diagnosis of Vascular Parkinsonism. Unfortunately, he said it wasn’t his expertise, and wasn’t sure if his diagnosis was correct. We continued to seek help and understanding as her symptoms progressed. I applied at Mayo Clinic Phoenix, but without any luck. We felt that we had exhausted all possible avenues.
By accident, a conversation with an acquaintance led to a connection with Mayo Clinic in Rochester, and we made our first visit two months ago. They asked for five years of all tests and other background information prior to arrival. Before we arrived, they had scheduled almost 20 appointments based on their reviews of those documents. By the day we left, they had identified three potential surgeries for her that we hope to complete as soon as possible . A second trip this week resulted in scheduling the first surgery in the weeks ahead.
The Mayo Clinic experience is like nothing we have ever experienced. It’s no surprise that it’s rated one of the best medical centers in the world.
You will be amazed with the entire staff, the communication, and the commitment to provide you the best care possible.
Have a successful and a wonderful experience in Rochester.

Hi Bob,
Your words are so healing. As a psychotherapist for 26 years, I know the power of encouraging individuals, such as yourself, and of group support. Many thanks!