Florida clinics

lisa g

Active member
Joined
Apr 17, 2019
Messages
83
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Hi Kevin
Glad to hear from you. I actually wanted to get with you and Kim and ask a question about ALS clinic. Do you go to Mayo? I am currently going to Cleveland Clinic in Weston for my second opinion. Not expecting a different outcome just for verification of original diagnosis. I'm located smack in the middle of the state on the east coast. Any of the ALS clinics ( Jacksonville, Tampa or Miami ) are going to be a 2 hour or + ride to get to. Was wondering if you or Kim or anyone else in Florida visited any of the other clinics and could give me feedback.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
63
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Hi Kevin
Glad to hear from you. I actually wanted to get with you and Kim and ask a question about ALS clinic. Do you go to Mayo? I am currently going to Cleveland Clinic in Weston for my second opinion. Not expecting a different outcome just for verification of original diagnosis. I'm located smack in the middle of the state on the east coast. Any of the ALS clinics ( Jacksonville, Tampa or Miami ) are going to be a 2 hour or + ride to get to. Was wondering if you or Kim or anyone else in Florida visited any of the other clinics and could give me feedback.
Lisa, I went to Dr. Michael Pulley at Jacksonville Shands for the evaluation/diagnosis. The choice to go there was actually influenced by my local neuro, who regularly referred patients to him. I do like Pulley, he is a “tell it like it is” guy but not in a brusque or abrasive way. He is also a big believer in thorough clinical exams as a major determinant of diagnosis. There was no comparison between his strength tests and the other tests I had done by my local PCP and neuro.

That being said, there are drawbacks. Shands /UF is a public hospital, quite crowded, the rooms are small and not conducive to a “calming” environment, and I don’t believe the clinic visits include a pulmonologist. I have set up a local doc for respiratory evaluations. Also, during both sessions with Pulley he had interns in tow, and I really felt like the ALS lab rat (“now notice the nature of the fasciculations in his left bicep and right calf” etc).

My wife and I are still weighing the options of regularly attending the clinic. To me, it’s just a way for the docs to document my decay. At my current functional level (still good), I’m inclined to skip the one later this month. Then we will see once things start going downhill. Many folks here will attest to the great relationship they have with their clinics, but I believe Kim leans more to my position: build good relationships with local docs, and decide for yourself whether regular clinic visits are worth the effort. Kevin
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
83
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
So much to navigate, it gets overwhelming. I'm pretty happy with the neuro from Cleveland Clinic and know she can set me up with any other doctors I'll need.
 

initforever

Member
Joined
Sep 7, 2016
Messages
16
Reason
Lost a loved one
Diagnosis
10/2016
Country
US
State
fl
Hope you don't mind if I chime in. My PALS had used Mayo Clinic in Jacksonville during his illness for clinics and such. (Meds, equipment, testing, etc). They worked closely with the local Drs. that he had. This helped in his care when he was no longer able to travel to clinic appointments. P.S. I noticed that you live in the same town as I do. If you ever want to talk let me know.
 

KimT

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Nov 18, 2014
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3,391
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PALS
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08/2015
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US
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South
Lisa,
If I were just being diagnosed, I would go to Mayo in Jax. They will spend more time with you and, if needed, can refer to various specialists for even non-ALS related issues.
It was my own decision to stop going to Mayo for ALS. I found a team of doctors in my area I trust and I actually knew some of them as clients when I was a practicing CPA.
The only drawback for me is that Mayo doesn't want to hear about supplements, alternative treatments, etc. The do have access to clinical trials and know anything that will be in the pipeline in that regard.

Kevin is correct about Mike Pulley. Great guy. Very thorough but extremely overworked. Also, facilities can't compare to Mayo Clinic and Mayo's customer service (call back) is next to none.
 

plcare

Member
Joined
Mar 5, 2019
Messages
15
Reason
PALS
Diagnosis
03/2019
Country
US
State
FL
I also live in central Florida and I have been going to the ALS Clinic at USF in Tampa. I was just diagnosed in March, 2019, so have only visited the clinic 4 times but I have found the staff to be very helpful, compassionate and empathetic. Since there is really very little that the clinic can do to impact the disease directly, I am most interested in visiting a clinic where I feel the staff sincerely cares about me as an individual and will help me navigate through the progression of ALS. So far, whenever I have had a question or needed anything the staff at USF has been very responsive.

I knew that the USF Clinic would be the best choice for me almost immediately because of the way I was treated during and after my initial NCS/EMG. When the neurologist completed the EMG I asked her about the results while I was still on the exam table. What the Dr did next was what convinced me that I was in the right clinic for me. Instead of giving me some dry, esoteric "medical" answer, she brought her chair over next to where I was laying down, took my hand in hers and explained that I had ALS. She told me to take as long as I needed before I got up, and I believe she would have at there with me for an hour if I needed it. I have seen many doctors at some of the best hospitals (including Mass General and Mayo), but have always felt like just another patient. I have yet to feel that way at USF.
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
59
Reason
CALS
Diagnosis
09/2017
Country
US
State
South Carolina
My PALS has been going to the Mayo in Jax since Oct, 2017. She just completed her 4th MDC in June, has been enrolled in the C9 longitudinal research study (P01 NS084974-1) since Jan, 2018 and is currently participating in the Biogen antisense (ASO) clinical trial (5 lp infusions to-date) to assess safety and tolerability of BIIB078 in adults with C9ORF72.

Kathy is extremely pleased with the care and compassion she has received at the Mayo. Trips to the Mayo are almost 400 miles round-trip and we have traveled there at least once per month every month this year (approx 15-16 visits total). While the trip can be tiring for her, we go down the night before when we have a morning appt and stay the night after if it is a long day (infusion days can range from 9.5 to 11 hrs in duration). During any and every procedure the medical and/or research team's primarily concern is her comfort and well-being.

Kathy never complains about going to the Mayo. She gets a sense of comfort from seeing her doctor, who is compassionate, yet forthright. Being a C9 patient, she has accepted her fate, but has not given up hope, and wants to do as much as possible for her children, grand children and other C9 patients.

We both feel fortunate to have the Mayo provide care and guidance for this debilitating disease. As I have noted in another post, we do not feel alone - any time we have had questions or concerns, we were able to contact her doctor (directly) and/or other members of the staff.

Ken
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
83
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I've heard good things about Mayo and USF in Tampa. I have been newly diagnosed and am now getting a second opinion through Cleveland Clinic in Weston. From there I'll have to make a decision on a clinic. Jacksonville is 3 1/2 hours from my house. Tampa would be closer. Miami clinic would be the closest but I haven't heard any feedback on it. I have another EMG scheduled for August 8th so I guess I'll make a decision after that.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,623
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I know UMiami only from having been in the pre FALS gene carrier study. The study staff were all lovely and Dr Benatar is very kind and brilliant. I can’t speak about the overall clinic though
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
83
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
Nikki, any opinion on Cleveland Clinic? I would love to stay with them. It would be so convenient for me. My SS and Medicare start in October, I snowbird to Ohio and figure I could go to Cleveland Clinic up there being I was in the system in the Florida facility.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,623
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I have no personal experience at all. One of our late members was misdiagnosed by them but he only had that one assessment. He was diagnosed elsewhere and didn’t go to their clinic. Everyone makes mistakes of course
 

KenM

Member
Joined
Jun 21, 2019
Messages
19
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
A number of you have been to more than one clinic, and have noticed variations in the quality of care. Most of it sounds like it focuses on the individual neurologist. Has anyone noticed a difference in the type and quality of care provided by clinics sponsored by different organizations (ASLA, MDA, Les Turner, etc). I assume they all over the same type of care, with the same philosophy and "best practices" but thought it would be good to ask.
 

Nikki J

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Mar 22, 2012
Messages
7,623
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PALS
Diagnosis
04/2014
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US
State
MA
I don’t think the certification matters much. It probably means some minimum standard. But ALSa v MDA. Probably not.

Each clinic has its personality I believe. I don’t think it is just the individual neurologist though that has an effect. Also the clinic director( s) make a difference too. I get very boring about Mass General I know. However the reason it is so successful and loved is that pretty much everyone is one the same page. I would guess it is the attitude of the leadership and that they have built a team of like minded people. My sister went to another well known clinic before mgh. She liked the doctor but hated the clinic.
 

lgelb

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Nov 5, 2009
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7,579
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Lost a loved one
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09/2009
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WA
ALS clinic "certification" is a business relationship, not a clinical evaluation. Go where you are comfortable, in or out of a clinic, unless you want to be in the front of the line for clinical trials-- here are the US intervention trials on offer as of this moment.
 
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