Florida clinics

lisa g

Active member
Joined
Apr 17, 2019
Messages
48
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
45
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
48
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

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,297
Reason
PALS
Diagnosis
08/2015
Country
US
State
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.
 
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