Finally have Appt at Mayo Jax Neurology drpt

Posted by joannemm34293 @joannemm30809, Feb 11, 2022

After suffering 2.5 years with these debilitating symptoms and having several different specialists diagnose me with something totally different than the other specialist is diagnosed me with I'm still at square one as to what is really wrong with me and it's been 2.5 years of hell.

I finally have an appointment at Mayo clinic in Jacksonville for March the 9th. I will travel the 7-hour drive and get a hotel and hopefully these doctors there can help me.

They gave me the name of the neurologist that I will be seeing and I cannot recall his name but I looked up some of the patient reviews and a good majority of the patients gave him a very poor poor poor rating and review. That's all I need is to spend all this money to travel up to Mayo clinic and have a neurologist that 99% of the patient review comments are negative about him. I can't take much more of these symptoms these debilitating episodes I have almost on a daily basis now and not know what in the heck it is. One doctor says it's anxiety attacks and panic attacks, the other specialist says I have dysautonomia, then another specialist disagrees and says I have vasovagal, then another specialist disagrees with it all and says he does not know what's causing these episodes that affect me from head to toe with a multitude of horrible symptoms etc and these symptoms come on at a nowhere.

I sure hope with the little bit of money I'll be investing driving up to Jacksonville from Southwest Florida and getting a hotel room Tuesday night March 8th to be seen on March 9th I hope this neurologist that I've read gets poor reviews from patients is better than what all the prior patients have said about him because I cannot take any more delays or just being passed around and pushed around with almost three years now this insanity.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Has anyone see a Neurologist at Mayo, Dr William Cheshire? If so what is your feedback about him? I've been reading some very negative reviews with 2.1-2.9 ratings. I've been assigned to see him on March 9 and I'm concerned because of the many negative reviews about this neurologist.

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@joannemm30809

Has anyone see a Neurologist at Mayo, Dr William Cheshire? If so what is your feedback about him? I've been reading some very negative reviews with 2.1-2.9 ratings. I've been assigned to see him on March 9 and I'm concerned because of the many negative reviews about this neurologist.

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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!

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@joannemm30809

Has anyone see a Neurologist at Mayo, Dr William Cheshire? If so what is your feedback about him? I've been reading some very negative reviews with 2.1-2.9 ratings. I've been assigned to see him on March 9 and I'm concerned because of the many negative reviews about this neurologist.

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@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.

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@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 Dr. Cheshire 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

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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

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@joannemm30809

Has anyone see a Neurologist at Mayo, Dr William Cheshire? If so what is your feedback about him? I've been reading some very negative reviews with 2.1-2.9 ratings. I've been assigned to see him on March 9 and I'm concerned because of the many negative reviews about this neurologist.

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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.

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@joannemm30809

@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.

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Hi @joannemm30809. I noticed that you had two discussions on this topic so wanted to keep them together. Because of that, you will notice that I have moved your posts into one discussion and have it in the Neuropathy group.

You've had some wonderful members come in and share their thoughts based on your concerns. Sometimes, it helps to gain some familiarity with physicians prior to meeting with them so I search for videos to get a feel for them before meeting.

I happen to find an unrelated video on his Twitter account that might help give you some flavor of who he is in case it helps you in any way: https://twitter.com/DoctorCheshire/status/1451636102511611909

Does this help at all?

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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.

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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

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