How often do you see your doctor?

[SanDiegoSue]

I last saw my doctor In June and I'm not scheduled to see him again until October. Is this typical?
Sue

 

[GregK]

Depends on so many things you didn't mention:
- How fast is your progression?
- What is your current level of capability? ( BiPAP, CO2 retention, still walking, etc)
- What were your last medical findings, anything new that requires monitoring?
- How frequent were your previous appointments?

and so on..

 

[lgelb]

Once a quarter is not unusual, but you should feel free to make an appointment whenever you think there is need -- more or less often based on the changes Greg mentioned.

And you aren't restricted to an ALS clinic. You can see any medical professional [in network, if you want reimbursement] any time, and many PALS get most or all of their care from a primary care doc.

 

[Kristina1]

My progression seems to be slow, and I am having clinic visits every 3-4 months right now. I was diagnosed same month as you, so I have only had 2 full clinic visits, but I had a "half visit" (just neuro, not breathing or rest of the clinic stuff) between my first and second clinics to just check in and discuss clinical trials.

 

[Nikki J]

3 months seems to be standard in my clinic but I have also been given 2 and 6 month intervals depending on what is happening with me. Whatever interval is stated the actual appointment is usually a little longer interval ( 4 months for the 3 month one) because of scheduling.

As Laurie said I know I can call in the interim with questions but also I can schedule appointments with the nurse practitioner usually for the next week if I want to be seen

 

[Firefighter58]

At first I started going to the clinic every month, now I go every six months.

 

[SanDiegoSue]

Thank you everyone. I feel better now.
Sue

 

[KimT]

I just go "as needed." My local neuro prescribed the Trilogy and wheelchair and I see him every other month. He is very open to alternative therapies and writes for any blood work I ask. I bought a spirometer and equipment that measures SNIP, MaxI and MaxE so I really see no need to go to clinic unless there is a clinical trial or something that I'm interested in. I can communicate with my clinic neuro via e-mail. My local doctors take good care of me.

 

[patoyeah]

I saw my doctor once, that was enough

he said I have ALS, I said " I want a 2nd opinion ", he said " you're ugly too " - Pat

 

[LizF]

Once I had my dx, and a second opinion, I was kind of left hanging with no more neurology appointments and no clinic visits. My GP (family doctor) is who I see for various things as needed, and our local regional health authority provides a Occupational Therapist who works with the provincial ALS society to provide me with equipment.

 

[Angiegal]

I loved Pat's answer! Actually LOL'd
I go to clinic every 4 months or so. Can call if there's a problem.

 

[mpnatx]

I go to the clinic, pulmonalogist, neurologist and primary every six months. Anytime if I need anything.

 

[PaulGrewe]

It seems like they both are far off in appointments. Even with the ALS clinic. Although the clinic is on top of things.