Orlando Fl Primary care physician referral

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melab

New member
Joined
Oct 19, 2018
Messages
9
Reason
PALS
Diagnosis
12/2018
Country
US
State
FL
Hello. Anyone in the Central Florida-Orlando area have a referral for a Primary care physician who can handle an ALS patient? I love my PCP but they are not equipped to handle an ALS patient. I am experiencing very quickly that the Central Florida area has little resources for assistance or guidance. Thank you.
 

KimT

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Joined
Nov 18, 2014
Messages
3,344
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
I had to train my primary care physician. She has many MS patients but I am her first ALS patient. I also have a local neurologist who is more familiar with the disease.

Where are you going to clinic? My local neuro took care of getting my PWC and my local pulmo ordered the Trilogy.

I guess you need to assess your expectations for a primary care doctor. Mine is very liberal in prescribing anything I want to try as is my neurologist but most primary care doctors serve as a hub for your team.

I only go to to an ALS specialist twice a year since I have all my needed equipment and only for information about new treatments/trials, etc. My local team of doctors can handle all the rest.

Maybe you can ask other PALS/CALS in your local ALSA chapter. They know the area and most of them have had the diagnosis longer.
 
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