Length of time in between ALS clinic appointments

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Marieb425

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I was wondering if people could share what’s the norm for the length of time in between ALS clinic appointments? My husband was diagnosed at the end of august and we went for his 1st clinic appointment at the beginning of October.

I was surprised to hear that he doesn’t need to be seen again for 3 months. Do people do other appointments during that time? Is this normal? We’re going to the clinic at Swedish in seattle. We aren’t able to easily get up to UW (traffic going north/south on I5 would make it miserable on top of an already long trip) and we also didn’t like the doctor who we saw there (not dr. Weiss). Thank you!
 
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lgelb

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3 months is typical, but you can always email/portal questions, get orders/rx written in between or ask for an earlier appointment, even via telehealth, if/as needed.
 

affected

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3 months is pretty typical as a general note.
As noted, if something changes suddenly you can always contact and ask to be seen earlier.
It does mean you want to have a way to easily make note of any questions or concerns you have so you make the most of each appointment.
Many PALS drop down to 6 monthly once they have equipment etc in order, and often even stop going once they have all they need.
 

lisa g

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I am seen at clinic once every 6 months. I still am mobile so there's no reason I need to be seen sooner. If I have a question or need a prescription refill I contact them through my chart.
 

Marieb425

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Thank you all, that makes me feel better!
 

KimT

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In the beginning I went every three months. Then I dropped it back to every six months. Now that I have everything I need, I use local doctors for Rx and orders. I did take part in an EMG study/training at Mayo but that has ended.

My local doctors have all my notes so they can handle anything I need.

I'll go back if/when I need a feeding tube because I'd rather have it placed at Mayo than locally. Just a preference.
 

Tomswife

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We are New York Presbyterian Columbia University ALS CLINIC. Once you have your first meeting with the clinic they will see you every 3 months. We can call with questions but they are slow to respond.
Since we are new, I dont know the level of care yet we will receive from the ALS Clinic. We shall see how it works out.
Our primary care provider/internist will support us as needed. We also get support from this forum and the ALS ASSOCIATION. ALS.ORG
 

lgelb

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Yes, many of us stop[ped] going once major equipment needs are addressed, unless enrolled in a clinical trial. If you think about it, past that point, addressing the everyday problems of ALS may benefit more from perspectives other than the clinic's, which will be better doing wheelchair orders than most other places, but not necessarily better at anything else.

Arguably, community practitioners like your own PCP, that know local resources , and you, have an edge in other areas that you might need, and are outside the "good ol' boy" ALS network that tends to take the path most traveled.

None of this applies to all clinics and areas, of course, but some of it applies to most. Most of all, if you're getting shrugs instead of solutions, look elsewhere before accepting the shrug.
 
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