Finally have Appt at Mayo Jax Neurology drpt

Hi Joanne @joannemm30809, I have a bad habit of sometimes misjudging people including doctors in situations like this. I can imagine what makes it worse for you is that you've seen so many doctors and still don't have any answers or treatments that have helped much. He might totally surprise you and I certainly hope that is the case. The good thing is he should be part of a multidisciplinary team and is one cog in the wheel. What I think would really help you is prepping for your appointment which I'm sure you probably already do. I've found that it sometimes helps me to breakdown the patient doctor barriers that sometimes exist and also plan my conversation with the doctor before I go to the appointment. A couple of links that you might find helpful...from the Patient Revolution website.

Tools for the Visit -- https://patientrevolution.org/visit-tools
Communication Barriers -- https://patientrevolution.org/barriers

Hope your appointment goes well and you can finally have some answers!

@johnbishop. Thank you for responding. I'm just so concerned after reading the many poor reviews by so many patients. It's concerns me greatly that all the time, expense etc to get to Jacksonville that it will be a similar situation with majority of others. How can one doctor get soooo many negative reviews on a dozen medical review platforms??? I'm about to give up.

@joannemm34293 I am glad to hear you now have an appointment at Mayo Clinic! If I was to read a review on a new doctor, and saw several less-than-stellar comments, my thoughts would probably run along these lines:
1. All too often I will see more negative than positive comments, whether it is a product from an online shopping service, or a car, or a restaurant. Many positive comments are simply not entered!
2. Remember, all patients are different, and have a different experience. I know you will go in with an open mind, and will have made sure ahead of time that all records needed have been forwarded to the doctor and his team. If you have been keeping any kind of a symptom journal, make sure you don't forget it at home! [I've done that!] Not every patient and doctor are the right fit, but striving to make the right connection will go a long way to seeing that he helps you.

Relax this weekend as much as you can, and on Monday you can start to gather everything you need. I will be curious to hear about your appointment!
Ginger

I agree with ginger, people with good experience rarely write reviews. I have never written a review on a provider. It is such a personal experience with so many variables.

You might want to check this following Connect thread about preparing for a specialist. There is a video and many suggestions from patients.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
And, if you do not feel you are treated fairly, the Dept of Patient Experience can be contacted,
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Laurie

I think John’s comment that hopefully “you can finally get some answers” is the key to having a good appointment experience and developing a good relationship with the new neurologist. I find I feel much better if I tell myself, before appointments, “Maybe I’ll get some answers”, and come prepared with specific questions.. We folks with PN know there is no magic wand, no cure, just careful, painstaking trial and error with testing, medication trials and changes, putting questions out here, following the links the mentors and others put up, etc. Who among us has never felt like crying out in frustration- “DO SOMETHING! Make it STOP!, but PN doesn’t follow that path. Take comfort in the fact (which I truly believe) that Dr Cheshire would not be employed by Mayo unless they felt confident in his skills. The surgeon who did my spectacularly successful spinal surgery had a really lousy bedside manner, but I didn’t need someone to hold my hand and make nice, I needed an excellently skilled surgeon. Don’t be put off if he’s brusque or gruff or makes you wait, you’re there for his knowledge and expertise. Wishing you all the best of good luck, be safe driving, and treat yourself to a double-dip ice cream on the way home (or sugar-free sherbet)! With the Mayo team, you will be in good hands.

After many months of waiting to get in to see the neurologist at Mayo in Jacksonville I finally have my March 9th appointment that they scheduled. I did not realize when this appointment was scheduled that it was also spring break and I'm seeing now that the hotel cost within 20 mi of Mayo are between $250 to $450 per night. The average American can barely afford the gas cost to drive to Mayo if they live long distance away like I do never mind having the money to pay these hotel room cost just so they can be seen by a doctor at Mayo and try to get some relief from chronic long-term debilitating illness. Now I realize why people that do not have a lot of money can just wither away and die from their health problems. I have no idea and have not received any info as to how many days I may be needed to stay from my March 9th appointment to even know if I'm able to afford two or three nights of a hotel so that I can get testing done. I sure hope that the neurologist that sees me on March 9th does not send me home immediately and then want me to come back say one week later for more testing because I can't afford the gas cost to get there never mind the hotel room. Good grief. I called the Mayo Clinic registration office yesterday and they said one hotel gives discounts for Mayo patients and they gave me their phone number and I called them and their discount for me is a Mayo patient was $268 a night that was their discount. Wow. I told my husband I'm almost about to wash my hands with all of this. I'm so disgusted.

If you have not read a discussion under Visit Mayo, see following link. The post discusses many of your concern.
https://connect.mayoclinic.org/discussion/how-to-best-plan-and-prep-for-my-visit-to-mayo-jacksonville/
Have you checked AirBNB or VRBO ?

Laurie

Do you have SFN?

Hi Joanne, I am so sorry for what you are going thru. I understand what you are feeling. My journey to get to Mayo Clinic was long and difficult. It took six years of drs not knowing what was wrong or misdiagnosis. So when I finally was able to get an appt with Mayo I was going to do everything in my power to get there no matter the cost. First and foremost do not throw in the towel!!

I have experience with the Neurology and Neurosurgery Dept, but it was at the Rochester Campus. So with that being said. Here are my takeaways from my experience both with Mayo and accommodations.

1) Accommodations - I had never been to Rochester so I had no idea how the city even looked relating to traffic, hotels, restaurants etc. had less than two weeks to finding a hotel. Got a recommendation from a co-worker who took her daughter to Mayo 5 yrs before. So I made reservations at that hotel. After my stay I decided if I needed to come back in the future I would not be staying there. Once I arrived and saw the city I started taking notes in regards to traffic, locations of hotels and restaurant for future reference. Until you actually arrive at your destination you cannot determine what accommodations will work for you. So my taking notes it helped me with researching possible hotels to stay at the next time.

2) like anything a person does for the first time you learned what you would do and not do the next time you do it.

3) Mayo Clinic Neurology Dept - When I came to Mayo for the first time I was looking for a diagnosis. My original diagnosis before coming to Mayo was severe ulnar neuropathy and carpal tunnel. I was told to plan for 5-7 business days for my time at Mayo. My experience with Neurology and Neurosurgery was phenomenal!! My medical team at Mayo absolutely ROCKS! I now consider them family.

4) Mayo understands that their patients are coming from long distances and does everything possible to schedule appointments as close together as possible. My first appointment with the neurologist was on a Monday, tests and more appointments Tues, Wed, Thurs and by Friday I was meeting with a neurosurgeon to discuss having surgery less than four weeks later. I did experience only one time for an annual checkup (I go back for annual checkups since my first appointment six years ago) where I had one appointment on a Friday and one appointment on Monday. In my case I live five hrs away, but I decided to go home after Friday’s appointment and returned on Sunday for Monday’s appointment.

Unfortunately Minnesota and Florida are in two totally different parts of the US. Thereby hotel customers are totally different. The majority of business for hotels in Rochester is made up of Mayo patients as MN does not have the amount tourists coming to the state as FL. So pricing in FL is driven by tourist dollars. Unfortunately Mayo has no control over the prices hotels charge.

Use the time while in Jax to gather info for accommodations for next time. Talk with the concierge at Mayo in Jax for help. There may be more options for stays than just hotels. Use their services as that is why they are there. Ask about when the low season is as pricing for accommodations maybe lower as less tourists are in the area. Ask questions as I am sure there hasn’t been a question they have heard.

Using this info you can plan for future stays in Jax in needed. For me after my first experience I found a hotel further from Mayo in Rochester with a FREE shuttle to the clinic and was within walking distance to a restaurant I do not go during winter due to weather and I stay away from holidays. Annual checkups gives me a little more wiggle room now for scheduling my appointments and finding a place to stay.

I apologize for the long post. The above comments are based on my experience and my opinion. Your experience maybe different. I wish you all the best!

Hope this helps