Anyone been to Neurology at Mayo Clinic in Jacksonville, FL?

Welcome, @autum07. Fantastic that you reached out to prepare for your first visit to Mayo Clinic neurology in Jacksonville, Florida. You'll notice that I moved your question to this existing discussion where Joanne asked a similar question and got so many helpful responses. See :
- Mayo Neurology group: Anyone been to Mayo in Jacksonville, FL? https://connect.mayoclinic.org/discussion/mayo-neurology-group/

I moved your message so you could read the previous posts and easily connect with fellow Mayo FL patients, like @ees1 @bethanderson49 @nancy82415 @ronstahl12 @lindes @ess77 @bsrice, to ask them questions as they come up over the weekend as you prepare for Tuesday's visit. Many of them have been to neurology specifically and can give you a good picture.

It's a good idea to call ahead and let them know about your need to not be vertical for more than a few minutes. The entire team and staff will accommodate you. Keep in mind that Monday is a holiday. You might put a message on your patient portal. Did you create an account yet?

Having your account created helps organize your appointments etc while on campus too.

At your evaluation appointment, the team will determine what further testing and appointments may be necessary. Usually these will be accommodated same day or within a short period of time. It might be wise to arrange for your children at home for a couple of days just to be sure.

Jump to this post

Hi Autumn, yeah that first letter doesn't give much information. Colleen is correct, set up you Mayo portal and things will fill in as the time gets closer. Your initial appoint will be there, and then 7 days before some questionnaires will appear. I had my initial appt with Dr Rozen, in Feb this year, after seeing him, he requested several tests and appointments with other doctors. We scheduled our hotel room for the week and let him know that we were only there for 4 days. The staff communicates with the other groups so effectively (really wish other systems worked as well as the Mayo), that I was able to get in all the appointments that week. Then scheduled follow ups once the results were finalized, which also were extremely fast. It is all driven by the first initial contact and where they think you should be seen next. Best of luck.

Jump to this post

As others suggested, look at letter you received and see if any information about setting up a portal account.
Not sure when you say can not be upright, but wheelchairs are available. Just ask when arrive.

As @bsrice mentioned, there may be questionnaires that can be filled out ahead of time. This saves time when you arrive. If not filled out ahead of time, the desk attendant will ask you to fill out when you arrive either via paper or on iPad. It is so much more efficient if do as much as possible ahead of time.

Also, pack all your medications so when nurse initially meets with you she can enter into your medical records.

Two other items,
- they will ask for your medical insurance cards to scan it. You probably have already provided info to Mayo, but desk attendant may ask for them to scan it.
- If this is first appointment, they may also ask if want to sign a "Authorization to Disclose Protected Health Information to Family and Friends" form. Due to HIPPA, they will not talk to anyone with out your approval. So if you want any of your children to have authority to talk to a provider, you will need to sign one for each person. Just need to know their full name and birthday.

Safe travels and good luck at your appt.

Laurie

Jump to this post

Thank you so much, this was super helpful.

Jump to this post

@autum07, and all...@colleenyoung and the Jax Mayo patients have given you a bunch of great information. That gives you a tip as to the reception you can expect from everyone on the Mayo campus and the phone staff. I've never experienced this degree of competence and caring from any other medical group or facility. I've sadly tried out several prior to landing at Mayo, and Mayo is tops.

I warn you, when you first drive into the Mayo entrance, you will be overwhelmed with beauty and color, Flordia color and trees, large old live oak trees, palm trees, and fresh, seasonal blooming flowers over the entire property. Lakes, fountains, waterfalls, parks... Each building is so beautiful, with architectural art inside and out. And, don't overlook the artwork throughout. It's worth the special attention.

I think it actually took me months to begin to notice the buildings at all other than to find the right one for the moment. But, after I began to have some positive results from my marvelous medical staff, one day I looked up and ...Wow! ...what a beautiful sight for my old eyes. I was shocked to see the beauty I was missing looking down. That was a milestone in my healing process at Mayo. I believe every aspect of the Mayo visit for each patient is designed to offer many varied healing avenues. The campus grounds with color and growth and natural healing. The buildings are so lovely in their design and form. The buildings inside with the unusual layouts and living plants are so very interesting and lovely. The inside artwork-paintings, sculptures, chandeliers, history, music...and don't miss the gift shop! It's in the Cannady Building in the newly renovated and redesigned area connecting buildings. It's fun to browse, soak up some fun goodies and help contribute a bit to Mayo...I do some of my gift shopping there for that reason.

These connecting hallways are calm, pleasant, and full of interesting art or history and plants. I use the hallways for my exercise when I'm there for appointments and feel well enough to walk a bit. I toodle down with my hot-pink walker at whatever pace is comfy that day. Some days it's walking between 2 buildings and back to my next appt or car. Some days I can include the 3 connected buildings down and back. I love those times and enjoy being around such beauty and kindness.

Most of my time during the first couple of years at Mayo were spent in the neurology department, in the Mangurian Building at the end of the driveway past other buildings and garages. I've seen several neurologists for testing, diagnosis, and treatment of several issues. They ruled out MS and a few other issues and diagnosed a couple of others. So, I got definitive answers fairly quickly considering the complexity of this stuff. The labs on campus are excellent of course and very fast. By the time you get back to your relatives' home, CK your patient portal that's the best around...and you may already have results shown! It's amazing. And, you'll probably have a message from a nurse or doctor with information and any new tests or appointments they suggest. It's an amazing system that works most often seamlessly and with such kindness, and care for you.

I live in Jacksonville, thankfully, so I'm continuing my care with the clinic. I feel strongly these doctors and this system have saved my life and given me several extra years of much-improved living, actually living not just existing. What a marvelous gift!...

This site connecting with patients has been an important part of my healing, learning, and growth. Stay with us and as you receive diagnoses, you may find groups that will be valuable for your health and living. I surely have. I now have a large group of 'friends' I feel comfortable sharing with for advice and even to hopefully help along the way.

Be safe, Be blessed. Elizabeth

Jump to this post

Thank you so very much @colleenyoung . I did create my account on the patient portal, however when I try to send a message I am receiving a response that I do not have recipients available.

Jump to this post

Right. Before you are assigned a care team, you don't have any "recipients" attached to your profile on the portal. I was thinking you might be able to send a general message, but I was mistaken. Please call on Monday or Tuesday am. You can also let them know upon arrival. Wheelchairs are literally everywhere for your use.

Will you be going alone or will a family member or friend be accompanying you?

Jump to this post

@colleenyoung I will call Monday and try to reach someone as my appointment is Tuesday at 6:30 AM. Thanks for your continued responses - I truly appreciate it.
My mom and husband will be with me. What we’ve been doing is keeping me flat in the car until called then using a wheelchair to get me to a flat place inside quickly for appointments and such. It’s worked so far. I’ll make it work. I’m a fighter, I can do this.
I can’t be vertical (sitting up included) for more than a few minutes, I’ll black out (why is part of my journey). If I’m focused and distracted I can push through to get further I just pay the price (pain/borderline losing consciousness).
I’m not going to stress. I will try to call and worst case scenario we will arrive early Tuesday and work it out. Do you know when the Mangurian Building opens? Also is it cold in there? I am thinking I should dress warm!
Thanks again so very much. I’m truly glad to have you and everyone here.
Autum

Jump to this post

@autum07, and all...@colleenyoung and the Jax Mayo patients have given you a bunch of great information. That gives you a tip as to the reception you can expect from everyone on the Mayo campus and the phone staff. I've never experienced this degree of competence and caring from any other medical group or facility. I've sadly tried out several prior to landing at Mayo, and Mayo is tops.

I warn you, when you first drive into the Mayo entrance, you will be overwhelmed with beauty and color, Flordia color and trees, large old live oak trees, palm trees, and fresh, seasonal blooming flowers over the entire property. Lakes, fountains, waterfalls, parks... Each building is so beautiful, with architectural art inside and out. And, don't overlook the artwork throughout. It's worth the special attention.

I think it actually took me months to begin to notice the buildings at all other than to find the right one for the moment. But, after I began to have some positive results from my marvelous medical staff, one day I looked up and ...Wow! ...what a beautiful sight for my old eyes. I was shocked to see the beauty I was missing looking down. That was a milestone in my healing process at Mayo. I believe every aspect of the Mayo visit for each patient is designed to offer many varied healing avenues. The campus grounds with color and growth and natural healing. The buildings are so lovely in their design and form. The buildings inside with the unusual layouts and living plants are so very interesting and lovely. The inside artwork-paintings, sculptures, chandeliers, history, music...and don't miss the gift shop! It's in the Cannady Building in the newly renovated and redesigned area connecting buildings. It's fun to browse, soak up some fun goodies and help contribute a bit to Mayo...I do some of my gift shopping there for that reason.

These connecting hallways are calm, pleasant, and full of interesting art or history and plants. I use the hallways for my exercise when I'm there for appointments and feel well enough to walk a bit. I toodle down with my hot-pink walker at whatever pace is comfy that day. Some days it's walking between 2 buildings and back to my next appt or car. Some days I can include the 3 connected buildings down and back. I love those times and enjoy being around such beauty and kindness.

Most of my time during the first couple of years at Mayo were spent in the neurology department, in the Mangurian Building at the end of the driveway past other buildings and garages. I've seen several neurologists for testing, diagnosis, and treatment of several issues. They ruled out MS and a few other issues and diagnosed a couple of others. So, I got definitive answers fairly quickly considering the complexity of this stuff. The labs on campus are excellent of course and very fast. By the time you get back to your relatives' home, CK your patient portal that's the best around...and you may already have results shown! It's amazing. And, you'll probably have a message from a nurse or doctor with information and any new tests or appointments they suggest. It's an amazing system that works most often seamlessly and with such kindness, and care for you.

I live in Jacksonville, thankfully, so I'm continuing my care with the clinic. I feel strongly these doctors and this system have saved my life and given me several extra years of much-improved living, actually living not just existing. What a marvelous gift!...

This site connecting with patients has been an important part of my healing, learning, and growth. Stay with us and as you receive diagnoses, you may find groups that will be valuable for your health and living. I surely have. I now have a large group of 'friends' I feel comfortable sharing with for advice and even to hopefully help along the way.

Be safe, Be blessed. Elizabeth

Jump to this post

@autum7. and all...My goodness, I'm so sorry you've had such a horrid time with these crazy issues. What a blessing you are getting to some of the very best in the world at diagnosing and handling these kinds of things.

My son was a lawyer with a thriving business when he was hit with Dystonia at age 35. Since then, he's had acute pain in his head, neck, shoulder, jaws, and left arm which he now can't use due to the pain. Chronic pain throughout his body. Now, after many years of no diagnosis and poor treatment, lots of meds, and a horrible life struggling to survive, he's seeing Mayo doctors. Neurology. He gets botox shots in all those areas, has a Dilaudid pump, and takes other meds and occasional nerve blocks and nerve ablations that help a tad but not much, and not for long.

He just saw the neurosurgeon who performs deep brain stimulation surgery to help folks with recurrent/uncontrolled seizures, and Parkinson's' patients control tremors, and now they're finding some patients with acute pain from Dystonia can sometimes get some relief. A lot of qualifyers in that sentence. We are currently awaiting notification that the team has accepted him for surgery and thinks it may help him have a future life.

So, you are coming to the place where very kind, caring, knowledgeable, talented folks work together to help patients like you and my son. I'm praying he will get the help he needs. He has no other family than me and I'm 75 with multiple physical issues. He very much deserves and needs this help. Hopefully, prayerfully, to stop or reduce the acute screaming raging pain he experiences and some way to allow him to have some semblance of life.

I'm praying you will meet Tuesday morning with the special, talented, knowledgeable, and wise medical staff who will be guided to help you find the same peace. You have a loving family and children, and parents to help you, but you must have your Mayo help. I'll be praying with you and thinking good thoughts until I get your update.

Well, I'm o the age that I'm rarely cold and love living in Florida with the lack of snow. But, at times, especially if you're not feeling well or have concerns you may get chilly. I don't know where you live, but I do know you don't want to dress warmly. The days will be in the 90s while you're here with a lot of humidity. The buildings do at times get 'chilly' when our summer rains come to visit, so I'd recommend wearing slacks and bringing a light sweater. I remind you you're walking into Mayo where everyone is dedicated to making you feel welcome and making your visit the best possible. You be your honest, open self and tell a nurse or assistant you're chilly. They have warm blankets in many places and can get you warm no matter what.

So, my new friend, no worries about your Tuesday morning visit. You are visiting a lovely campus made to make you feel better from when you first drive into the property. It may be challenging, but please try to see the beauty surrounding you at the clinic. And, notice the smiles and kindness. There's good food, too.

Oh, take advantage of the excellent valet parking at the front door of each building. The cost is $8 to park and they will get you a wheelchair and volunteers are available to drive you wherever you need to go. I tip $2 to the fellow bringing me the car. It is simple, easy, and fast. Mangurian is currently no charge for valet parking due to the building next door...a fantastic new, first of its kind I think????, a huge laser/cobalt??? beam to treat cancers and such. I only got the scuttlebutt from the valet, so need to do some research. But, this shows you this is a place of life-changing research in many fields and medical miracles.....good gracious! I sound like I should be paid to advertise...no, I'm simply a very pleased, happy patient who's thankful to be experiencing the results of the Mayo healing system.

I'll be thinking of you...Be blessed. Elizabeth

Jump to this post