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

In that case, I hope you'll also follow the Brain Tumor group and join the discussions here:
- Brain Tumor support group https://connect.mayoclinic.org/group/brain-tumor-support-group/

@joannemm30809 Hi Joanne. We corresponded a ways back. I'm so happy to see that you've got a scheduled neurology appointment at Mayo in Jacksonville. What great progress in ruling out conditions and being proactive.

I attended Mayo's Pain Rehab Center in Jacksonville over a year ago due to a plethora of symptoms. I have chronic pain and sensory issues, ranging from digestive, joint, muscle, nerve, sight, sound, taste, touch, temperature, and the psychological hurdles of anxiety and depression. After ruling out all acute issues and having the full spectrum of tests over many years, I discovered a chronic condition called Central Sensitization Syndrome (CSS). Pain Rehab was my game changer. The team there provided me many tools to calm my central nervous system and quiet the storm in my body. Many symptoms are more manageable now and some have dissipated. It reshaped my life.

I truly understand your frustration of searching, and I wish you all the luck in finding answers. If at the end of the day you or your doctors aren't able to get a handle on your symptoms, and their causes, will you please investigate Jacksonville's Pain Rehab Center, and reach out to me with any questions?

I will. You too keep in touch. All my many debilitating symptoms do not give me any real pain, just a very very sick, very ill feeling all over with acute sensory shifts, visual, heart rate and bowel movement issues etc

@joannemm30809 Yes, I will keep in touch. I'm sorry you experience such a sick feeling and sensory shifts. Keep in mind you do not need to feel pain in order to attend Mayo's rehab center. Many people are in your same boat there. Keep your chin up. Will you keep reach out if you need anything?

@joannemm30809 Hey Joanne, how are things going this week?

@joannemm30809 and all...Hello, Joanne. I live in Jacksonville, Fl, and have been going to Mayo Florida for multiple consults and multiple diagnoses and treatments regularly since 2019, and was one of the first patients when they first opened in 1986? I was misdiagnosed by local doctors over 12 years with MS, finally got quite ill, and was getting no treatment or help. So, I was sobbing when I called and asked Mayo for help. Saw the MS neurologist in April, and so began my saga of healings.

In 2019 I had my first visit to neurology, the first of many wonderful, informative, and healing visits at Mayo Fl. I've seen several neurologists. What are the issues taking you to Mayo neurology? I've seen one for seizures, for MS, for Parkinson's, my son sees a movement specialist for Dystonia and botox injections, I also see a rheumatologist for Sarcoidosis and Vasculitis. and other specialists for other issues. One neurologist has a name beginning with 'W' and it sounds like 'S'. Could be yours?

Have you received a schedule from the clinic? You also have access to your patient portal with a plethora of information that will be oh, so helpful all your time with Mayo care. It's truly wonderful and easy to understand and use. @colleenyoung is the Connect director and will be a great help. She can put you in touch with others who go to Mayo Florida.

Please contact me with a bit of information so I can help you. This is an area in which I may have good information for you.
Blessings as you begin this exciting journey to answers and hopefully healing/treatment. elizabeth

Hi, I just returned from my first visit at Mayo Clinic Jax. What a different experience from other doctor experiences. Everyone from the Greeters to Techs and so on were so friendly, patient and informative. We stayed off site at a local Hampton Inn about 5 minutes away, discount given if state Mayo patient. I saw Dr Rozen, Neurology and Dr Wang, Rheumatology. They reviewed all my previous tests, lab work and procedures and ruled out many things. I have a working diagnosis of CSS and Daily persistent headache, chronic. All results of how my body reacted to the Covid vaccine, it went into overdrive while making the antibodies and didn’t stop. I will go back in May to attend the PM classes to help me deal with the daily pain and symptoms. My advice, have copies of all tests either on CDs or paper that you can provide the check in nurses and doctors. I uploaded my medications list on the patient portal, so it was quicker to review. They both agreed that my local doctors did a thorough job to rule out any other diseases. It really is paying attention to your symptoms and what affects them. We had a daily notebook with 10 months of data to show them. Good Luck, we are so glad we went.

@bsrice Hello there. Thank you for sharing your experience at Mayo Jacksonville and how your diagnosis came about. Central Sensitization Syndrome (CSS) and daily persistent headaches are difficult, but I have confidence you will learn tools to help manage.

Way to go on keeping a daily notebook with 10 months of data. It seems to have paid off for you in narrowing down diagnosis with your Mayo doctors. I did the same and it was implemental in my CSS diagnosis as well. You must be relieved to have answers and a direction. Do you mind sharing a little more about the pain management program you will be attending in May?

I am interested in going to the pain clinic in Jacksonville for neuropathy and fibromyalgia, among other conditions. What is my first step, etc. Thank you.

@bsrice and others...Good for you! I'm so pleased for you that you had such a good experience at Mayo Jax. I'm afraid I'm a regular on that beautiful, healing campus, with a plethora of issues all being diagnosed and treated. But, this nutty body keeps finding new challenges for me and the staff at Mayo.

The first thing I noticed on campus, other than the beauty surrounding you from every direction, is kindness. It's legitimate,and everywhere you go. The dining room, the restroom, labs, testings, staff and doctors. The volunteers are also the best I've seen. They're gray haired like me, so it's kind of fun to say 'hello' and get such a great smile and help.

Again, congratulations on getting to Mayo Jax and getting solid answers. The Mayo system is truly remarkable. I am still amazed that my doctor may pick up the phone and call a colleague in his department or another altogether to discuss my concerns. They actually speak with each other about the patients! Amazing! They consult and we get the benefit of the collective knowledge and care of each doctor we see. And some we don't...

I went this week to another hospital in Jax for an x-ray and a couple of tests, ordered by the only non-Mayo doc I see now, my PCP. The comparison was startling. The level of concern for me as the patient was far less than when I visit Mayo, I was actually shocked. I was in pain, I needed help getting off the table...One fellow was wonderful, explained their procedure, and offered his strong arm. All others stood around or ignored me. I am truly blessed and now you are to have access to such excellence.

OK. Enough. Just to say welcome to Jax Mayo and may your visits continue to bring you healing and peace. BTW: Dr, Wang is my rheumatologist as well. He's a gentle, kind, knowledgeable doctor who treats his patients with respect and care. He's helping me greatly. I've seen several neurologists, all excellent.

Blessings on your journey. Elizabeth