Florida PALS--Clinic comparisons

[Lynk]

Hi,
We are scheduled for a clinic at Jacksonville Shands with Dr. Pulley on August 18, which is covered by our insurance. We also got scheduled for a Dec. 17 clinic at Jacksonville Mayo after we saw Dr. Boylan last week. Our insurance doesn't cover Mayo but we are on one of the dates at Mayo that the MDA Assn. pays for.

In October I will have open enrollment for health insurance and can switch to BC/BS, which would cover Mayo, but I would have to change my primary care doctor who has been my doctor for 25 years and learn a whole new insurance system. I will not have been to the Mayo clinic when I have to decide about this.

Does anyone have experience with the 2 Jacksonville clinics for comparison and also with the USF clinic in Tampa? It is a 3 hour drive for us to Jacksonville and a 5 hour drive to Tampa, but we have close friends in Tampa.
Thanks for your advice.
Lyn

 

[gooseberry]

We go to the clinic in Tampa. Initially, they were very helpful and knowledgeable. As we gained more knowledge they seem to be able to offer less, especially since Steve also is seen at the VA. All in all, Steve is almost ready to discontinue going there. He isn't seeing the benefit but is going to give it one last shot in October.

 

[tripete]

I do not know about the clinic at Shad, but Dr Pulley first diagnosed me and was my favorite of all the doctors I have worked with. He is very good at what he does and has even been involved in ways to "remotely" help people with or being diagnosed with ALS. He is one of the few who called me on the phone several times to follow up with some questions I had or to provide me with information. I think you will be in good hands. If we had not moved to PA and would have been closer to Jacksonville, I certainly would have stayed with him.

 

[djbailey]

We went to Mayo and really like Dr. Boylan and the staff at clinic. It is a 4 hour drive for us and we have now switched to MUCS which is local. After some time you will come to appreciate a closer location where you don't have to stay in a friends house (which most likely will not be set up for your handicap needs) or to stay in a hotel in order to get to a 7:00 AM clinic (MAYO). As Mayo has a great reputation and Dr. Boylan is well respected in the field, they have a large demand of patients wanting to get into clinic and we found that you tend to have to wait about 5 months to rotate back in, not the recommended 3 months visit. Mayo will most likely give you a better opportunity to get into a trial of some sort if you are looking for that. Knowing what I know now, I would tend to pick someone based on how close they are to my location, of course reputation plays into it as well. The closer they are the more they are plugged into the community resources.