Seeking doctor in Seattle

[ulysses27]

Hi @ulysses27 - I'm another local. Husband and I are science-based so we called EVERYWHERE looking for an MD but the only one we've been able to find is in Portland. @Learner1 knows of a few NDs who follow a lot of science-based protocols and have been helpful with ME/CFS patients. The doctors out here don't seem to know anything. We've been dismissed by one Internist at Polyclinic for being a complicated case, had a Cardio at Overlake send us home with links to mindfulness courses, had an immunologist tell us my husband was just having some allergies to our pets, and had an Infectious Disease Dr at Overlake (who actually studied under Montoya) tell us that my husband will get better within a few months and that he wants nothing to do with us being guinea pigs down at Center for Complex Diseases+Stanford. We are actually considering moving down to Sacramento so we can have regular visits with Dr. Chheda but will make that decision toward the end of the month. We have our first visit with her in two weeks. How do you like her?

Hi ratmom, sorry for the delayed response. Dr Chheda, as you've probably already found out is very good. She listens and is always trying to put things together. The testing is extensive and can be expensive. I've seen her for a year now and appreciate her dedication to getting me better. My only frustration is i haven't improved much but I guess everyone feels that. Hope she's helpful to you.

 

[Gingergrrl]

@Learner1 I totally agree with everything that you said above but just have not had as good an experience with doctors in LA! Including my experience working for a hospital for 12 years and then my mom's experience with terminal cancer (at a different hospital).

I thought you were referring specifically to ME/CFS specialists in LA and the only one I know of is Dr. Chia (if you are interested in pursuing enteroviruses).

But if you are referring to doctors in general, then of course there are both good and bad like in any city. I spent a full year trying to find a neuromuscular specialist here until I realized it was futile and gave up and the same for finding a PCP. But my MCAS specialist is here and he is phenomenal. So sometimes you find a gem, but in my experience, I would choose No. CA (over LA) b/c so many more options up there.

 

[Learner1]

Northern California is the best.

 

[JinZ]

What cause was found that Kaiser missed?

I got my lab results back and I have high titter of Coxsackie B3 =)! Yay a biomarker finally.

 

[Learner1]

Its always good to find something treatable.

 

[serusaert]

it really is a dead zone here in seattle. i have had two medical appointments backed out and not billed with two different providers because their staff had incorrectly indicated that they were familiar with and had experience with me/cfs when they actually knew next to nothing about it. i'm mainly looking to document the disease so that i can make a disability claim when the day comes that i cannot work - even with the accomodations i have.

i had thought that getting the small fiber nerve count test performed would help, but i'm at a loss for finding a dr that even knows what that is and why it's relevant. btw, peripheral neuropathy is progressing and the fatigue is starting to cause me to decompensate a bit. i'm pretty sure that sooner or later, i will not be able to work, as i've had recent bouts that left me useless for days.

 

[Learner1]

I'll PM you.