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.

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@joannemm30809

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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Let me just add my good wishes for your upcoming visit. All of the help here should see you through to a better outcome.

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how does one start the process to get an appointment at the mayo clinics

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@nancy82415

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!

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Do you mean that you return for annual checkups in Neurology? Or were you able to be seen at Mayo for primary care? If the latter, was it difficult to become a patient in primary care there? I have recently been a patient in Neurology at the Rochester campus.

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@pacer3702

Do you mean that you return for annual checkups in Neurology? Or were you able to be seen at Mayo for primary care? If the latter, was it difficult to become a patient in primary care there? I have recently been a patient in Neurology at the Rochester campus.

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Yes, my annual checkups are in Neurology due to having Chiari Malformation and Syringomyelia. This condition needs to be monitored annually for me. My primary care is still in my home state.

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@nancy82415

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!

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hi Nancy how do you get an appointment to the Mayo Clinic how long do you stay for treatment thanks George

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@miho

hi Nancy how do you get an appointment to the Mayo Clinic how long do you stay for treatment thanks George

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Hi George. My orthopedic hand doctor referred me. My very first time at Mayo I was there five days. The next time I went was for surgery. Spent one day at the clinic for pre-op appointments and was hospitalized for five days. Since then the annual checkups are 2-3 days. I usually have two appointments with neurology and orthopedics dept and a MRI.

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I've been trying for more than 6 months to get an appointment from Mass. General Hospital in Boston which is huge and has a large neurology department to no avail. Been diagnosed with motor-sensory peripheral. Same with Beth Israel. The medical industry is in Serious Trouble! And I'm here in Boston which has a huge medical community. No one is talking about very much needed reform. Many are leaving the field.

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@nancy82415

Hi George. My orthopedic hand doctor referred me. My very first time at Mayo I was there five days. The next time I went was for surgery. Spent one day at the clinic for pre-op appointments and was hospitalized for five days. Since then the annual checkups are 2-3 days. I usually have two appointments with neurology and orthopedics dept and a MRI.

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Hi Nancy. Thank you for your info, which clinic did you go,and how long did it take to get an appointment? What type of surgery did you have,? what kind of doctor?neuro surgeon ,or an orthopedic surgeon did your surgery. I hope the surgery helped you out! thank you George

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@miho

Hi Nancy. Thank you for your info, which clinic did you go,and how long did it take to get an appointment? What type of surgery did you have,? what kind of doctor?neuro surgeon ,or an orthopedic surgeon did your surgery. I hope the surgery helped you out! thank you George

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I am a patient at the Rochester campus. It took my dr three months and three tries to get an appointment for me. I had brain decompression surgery. A neurosurgeon performed that surgery. I had an EIP Opponensplasty performed to improve the use of my thumb three years later. That was performed by a orthopedic hand surgeon. Both surgeries were successful. The brain surgery stopped the progression of my Chiari Malformation and Syringomyelia and kept me from being paralyzed and confined to a wheelchair. The hand surgery gave me back the use of my thumb. I absolutely love my medical team!!! I thank GOD everyday for my Mayo doctors and I ask HIM to bless them for the wonderful care and support they continually provide me.

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HI Nancy. Thank you again for your info, I am glad you had so much success with your surgeries, I have had two surgeries on my lower back, fusion surgery L5 S1 did not work,2nd surgery to remove rods and screws, and tried to fix a nerve that was causing so much pain, made it even worse, pain on right side is now also on left side.My surgeon (orthopedic) said nothing more he could do, suggested I get a spine stimulator implanted in my back, did not do it, i know two friends that had it done, it did not work ,so I am at stand still, get shots in my back that have helped, but now not so much, had my last injection on February 15th, two weeks later my back and legend foot pain was back, and worse than ever, tried pregnasone six pack ,6 pills one day then one less for six days, pain less severe until I finished the pills now severe pain ,next step, speak to pain Dr. to discuss what we will do moving forward. thank you again for your info and letting me vent about one area of my sever pain I have cervical pain c5 c6 neck pain. also shoulder ( three sugeries) and arm and hand pain, left knee surgery(two) getting symviscous ,shots every six months, that aren't working as well as it use to(four years) do for my next injection in two weeks I hope it will give me relief, doctor talking about knee replacement surgery thanks again George

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