Warning -- not all clinics are equal

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adozi

Distinguished member
Joined
Dec 28, 2011
Messages
233
Reason
PALS
Diagnosis
03/2012
Country
US
State
KY
City
Louisville
So i was going to a great multidisciplinary clinic in Nashville, but we moved to Louisville. I assumed all the clinics on the CDC ALS clinic locator were multidisciplinary, so i asked to be transferred to the MDA clinic in Louisville. But it's just a doctor! Why even call it a clinic if he just refers me to a pulmonary specialist and a wheelchair company?

Sidenote: At the time, none of the clinics in Kentucky or Tennessee were listed on the ALS association or the MDA websites. I don't know whether the situation has been rectified now.

Anyway, apparently you have to actually ask if the "clinic" is multidisciplinary or just a doctor. Which is bulls**t, in my opinion. As if pALS and cALS don't have enough to deal with!

Anyway, here is the KY multidisciplinary (truly) clinic info:

ALS association multidisciplinary clinic is located at university of KY. Contact is Patricia Peak at Patricia at alsaky dot org

the clinic i now have an appointment with this month is unaffiliated, but is a joint venture between the university of Louisville and Frazier Rehab. I'm not sure who the contact is, because i found it in a roundabout way, but just call UL neurologists.

The MDA ALS clinic is not multidisciplinary!
 
It is my understanding that in order to get into an ALS Clinic you need to get a referral from a neurologist. It is also my understanding that a pulmonary test is always performed prior to seeing a neurologist after you have been at a prior clinic.

Rick
 
There are no hard and fast rules about referrals and transfers between clinics. In many settings, you can self-refer, as we did. "ALS clinic" means many things to many people, so the best way to see what you might be getting into is to go on line or call and ask. Also, depending on your insurance, you do not have to rely on the home health, social work, DME and or other resources that might be affiliated with the clinic you visit. These may or may not be the most robust in your area. Remember, you are a patient, not a disease, and an "ALS focus" for an incurable disease means a lot more when writing a wheelchair order than coordinating ongoing care.

The most complete list is at ALS Clinics by Country - World Federation of Neurology Research Group on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis but it excludes some of the unaffiliated like the one you mentioned. For many people, the closest academic medical center is a place to start.
 
Thanks for the link, lgelb. Rick, the MDA clinic i was referred from didn't seem to be aware that this location wasn't multidisciplinary. I guess this might be applicable only in my situation because i moved. Perhaps this should have been a rant &rave. But i really think pALS and cALS shoulD self advocate. If they weren't referred to a clinic, they can work backwards if needed.
 
I am clearly not aware of how things work out side if ND and Western Minnesota. :)

Rick
 
We had no problem transferring from Duke's ALS clinic to Jacksonville, FL's Mayo ALS clinic on our own. Upon moving to GA, we had to decide between Mayo or Emory. We decided the mileage is shorter to Mayo. We just called on the phone, they asked all the "whys", got an appt., then had all husbands medical records transferred. No problem. Incidentally, both clinics are top notch. Could not ask for more caring doctors, nurses, therapists, etc. at both clinics.
 
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