als clinics

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getstevewell

New member
Joined
Aug 4, 2021
Messages
5
Reason
Loved one DX
Diagnosis
04/2021
Country
US
Do you all go to the als clinics available or do you deal with your regular primary doctor?
 
I do not go to an ALS clinic. Instead, I build a team of medical professionals that I work with and see as necessary. This has worked well for me so far.

Steve
 
Lots of PALS go to clinic at the start as it can be beneficial to do everything in a day. Take plenty of fluids and quality snacks and comfortable clothing.
Once all your equipment has been sorted and ordered, you may find you decide not to go to clinic anymore but build your own team of support. Since the PALS you love is very recently diagnosed clinic may be really useful just now.

Would you like to tell us a little more so we can be more helpful?
 
I agree with Tillie that it depends on your wants and needs The clinic as she says is very helpful for equipment and setting things up and you would be seeing pt and ot etc who really know and understand ALS If you choose no clinic you are going to have to do more research and work yourself to build your team. Most pcps do not know a lot about managing ALS and cannot manage all the pieces of care the way they might for things like diabetes.

I have a great pcp but I go to clinic. Some clinics you see all the team every visit. At mine they usually ask me who I want to see. Occasionally my neurologist has said I want you to see pt today

I hope the diagnosis was made by an ALS specialist not the pcp or a general neurologist?
 
I go to clinic twice a year. I keep a local neurologist, pulmonologist, physical therapist and my PCP if the need arises since my clinic is 2 hours away. Clinic is good as you see your team all in the same day and they can focus on your equipment needs. Once I feel traveling to clinic becomes to hard I'll have my local doctors that will be familiar with me.
 
I go to clinic for the one stop shop. I am blessed to have excellent care at the clinic being in the Chicagoland area.
 
I do both. Also I am using a functional medicine physician for primary care.
 
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