Florida Clinics

[lisa g]

Was wondering if any PALS living in South Florida have ever used the Phil Smith Neuroscience ALS Clinic in Fort Lauderdale? All the Clinics seem to be anywhere from 2 1\2 to 3 1/2 hours from where I'm located. This one seems to be the closest and is rated as an ALS certified center of excellence. Would like some feedback if anyone has used it.

 

[Nikki J]

No feedback on it but don’t get hung up on the certifications. They are really more political than anything

 

[lisa g]

Thanks Nikki, trying to determine where to go. Out of the 8 Clinics listed in Florida only 5 seem to say that they're an ALS Certified Center. Ideally I would like to go to Mayo but that one is the farthest from me almost 4 hours away.

 

[Nikki J]

Fwiw neither mgh or UMass which are the 2 places in MA I would recommend first are ALSA centers. They are MDA But thst is politics too I would look on the NEALS website and see what they list, then I would look at their websites and the doctors’ credentials and I would do what you are doing and ask PALS

 

[melab]

What town in to are you in?

 

[lisa g]

Fort Pierce

 

[melab]

Dr tawfig Latham is at orlando health in Ocoee. He's knowledgeable and they have a clinic

 

[melab]

Its laham. Latham

 

[KimT]

University of South Florida and Miami both have excellent clinics. Miami is shorter in miles but Tampa might be an alternative.

 

[lisa g]

Thanks Kim and Melab for the input. My #1 choice is Mayo but it's almost 4 hours away. I think I'm leaning towards Miami. I'm comfortable with my neurologist who is 2 hours away in Weston but unfortunately they don't have a Clinic there.

 

[melab]

I have been to mayo, both univ of fl clinics and seen Dr laham. I live in orlando and currently go to Gainesville. Mayo was just a terrible experience for me and cost me about 6 moths delay in diagnosis under Dr oskarson. Dr wymer in Gainesville is very nurturing. So is laham in orlando

 

[lgelb]

Just a reminder of the clinic map I maintain. Always soliciting updates! Lisa, based on the map, if you haven't seen them, Ft. Myers and Sarasota may be equidistant options beyond those listed here. Also, if you like your neuro, you can build a care team around him/her; you do not need a formal clinic.

 

[lisa g]

Thank you for your input Laurie. As much as I'm comfortable with my neuro unfortunately she is a little over 2 hours away from me. So it would be the same distance to be seen at a clinic and have all appointments in one day.

 

[KimT]

I think Miami is a good choice, Lisa.
The other thing is make sure you get a local team together because, at some point, you may get tired of clinic visits. The more I learned, the more I was able to get things done within 10 miles of home. My local neuro is a pain management specialist but has had a few ALS patients. My local primary care has a ton of progressive MS patients and also specializes in nutrition. She was very willing to learn all about ALS. I found an OT and PT that have had ALS patients but the final piece of my puzzle was to find a way to get my breathing tested. I ended up learning a lot about testing and splurged in buying my own testing equipment which my ALS doctor in Jacksonville and my neuro here find acceptable. I get an ABG every year at Advent Health which is about 8 miles away.

I still travel to Jacksonville about twice a year but it's nice to have providers so close to home.

I understand my method might only work for me but I'm very happy with it. When I go to Mayo I always schedule an appointment with my ENT there. She and her speech pathologist are wonderful and have helped me with GERD. She also found a speech pathologist within 5 miles of me for future reference.

Let us know how you like Miami. I have a PALS friend in West Palm Beach who had been going to Mayo and wants to make a change.

 

[lisa g]

Thanks Kim,
I appreciate the info. I do have some doctor's lined up close to home. I have a great PCP who noticed something was wrong before I did. I have also found a physical therapist and speech therapist close that have dealt with ALS. There is also a pulmonologist that is has been recommended. I have an order from my neuro and will be giving him a call.

I'll be going in to have a pic line put in this week and start Radicava infusions. So once I have a schedule set with that I'll set up an initial appointment with the Miami clinic.