Mayo Clinic, Jacksonville

[MLane]

Hello all,
I am brand new to the forum and this is my first post. My name is Mickey, I'm 36 and I live in northern LA. am married and have 2 children, I have had menacing symptoms for about 10 months & have an appt. with Dr. Boylan at Mayo Clinic in Jacksonville at the end of this month. I was wondering what some of your experiences have been at this particular clinic and this particular Dr. Is he nice, compassionate, to the point, etc.. What should I expect? I appreciate any input.

 

[tdodson]

Hi Mickey. My family went to Mayo at Jacksonville in 2010 with my mother. Her doctor was Boylan. I liked him. He did the normal ALS tests and looked over the EMG results we brought with us. He did agree that it was ALS but he was good about answering questions we had. I believe we talked to him for about 15 minutes after diagnosis about questions we had. This was one of the few doctors we saw that did that so we appreciated it, although we did not like the diagnosis.

The clinic itself was fine. Not all the paperwork had made it there by the time her appointment came up so we were filling out forms for the 2nd time almost up to her appointment. Not completely their fault but still annoying.

We stayed at the hotel attached to the clinic. It is a Residence Inn. That was very convenient for us and if something comes up and you need to stay longer they are really good about letting you stay. We had an A/C issue the first night but it was fixed within an hour of reporting the issue. Pretty much all the people in that hotel are patients or family members of patients so it was very peaceful and everyone was helpful from the staff to other guests.

I hope you have good news at your appointment.

Todd

 

[momap53]

Hi Mickey and welcome to the forums

I went to Jacksonville Mayo for my second opinion in May of 2011. Dr Boylan was kind, personable and to the point.
We took copies of the results from all the previous testing that had been done (labs, LP, EMG/NVC, Doc notes,etc) along with discs of all of the MRIs. He listened to my history, reviewed all materials that we brought and conducted a neurological exam and another EMG/NVC.
He introduced us to the research team so we could ask questions about current Clinical Trials. My daughter and I were able to give blood for a current study that was underway. ALSA info and care guides were given to us. Doc advised me to apply for Medicare and SSDI. He gave me a script for an AFO to cope with my R footdrop and encouraged me to start Rilutek. He gave me a letter confirming my diagnosis of ALS.

We stayed at the Marriot Inn on campus. It was wonderful! We had a kitchenette and internet service. It is connected to the building where our appointment was by a long hallway. I was able to use my rollator to travel from our accommodation to the doctor's appointment and go back to our room to rest and have lunch before the afternoon EMG.

I chose to attend a different ALS Clinic in Augusta, GA because of the travel time, 3 hours to Jacksonville vs 2 to Augusta. Be aware that if you choose to go to a different Clinic for treatment you will probably undergo yet another review of work already done, (hand carry copies of everything with you) another neuro exam, and probabably another EMG/NCV prior to being admitted to the Clinic. The doc that is treating you will want to make doubly sure that he's treating you for the right thing. I was able to schedule a "Clinic" appointment for the next month after my initial exam/review appointment with the Neuro at MCG. I was also able to meet the Clinical Trial Coordinator and be screened for enrollment in the Ceftriaxone Clinical Trial.

Good luck to you and let us know how it goes.

 

[momap53]

My experience there was good. More coming after the moderator approves it.

 

[Magpuff]

I live 2 miles from Mayo so it was an obvious choice. Dr. Boylan heads up the Neurology Department that has 45 doctors, surgeons and researchers. He is very good and when he wants something done it gets first rate attention.

The Clinic is equally good and very efficient. If you need anything done it is handled immediately.

I also have a primary care doctor there that is also palliative (end of life) care. She is very nice and treats the whole family through this journey.

 

[MLane]

Thank u Todd & Deb for your valuable input. Mickey

 

[Atsugi]

Dr Boylan is the best. Compassionate, takes the time to help you. They can run any test, instantly summon any specialist, explain it all very well. They have a very patient-centered appointment that takes several hours or all day if you need it.

He helped with the worst news, as well. He told my wife and I to expect 2-3 years life expectancy in our particular case. But I took him aside alone and told him I was planning to buy a house specially suited for ALS, and asked for his most brutally honest opinion. He shook his head, and said "don't buy a house, she won't live that long." He was right. she died 6 months later, having had the best quality 6 months possible.

Sorry you're in this. I hope your prognosis is better, your providers tell you the truth, and your life is the best it can be.

 

[MLane]

I thank u all for your kind words & helpful information. Mickey