Multiple Sclerosis

I had Dr. Dustin at Kaiser Oakland as a Neurologist in 2009 when I had my first MS attack and hopefully he has retired, because his bedside manner was lacking and he gave me some pretty bad advice. I think that may have been a typical "old school" neurologist thing though, and I bet they now have much better neurologists at Kaiser Oakland. I am now at Kaiser Sacramento and I believe I'm getting outstanding care. My neurologist (Dr. Waheed) is an MS specialist and is on top of all of the latest research, as well as being supportive of any alternative therapies I want to try. I am also on a gold standard disease modifying therapy (DMT) and had no resistance from Kaiser to getting on it (I was happy to accept that they use Rituximab rather than more expensive very similar medicines like Ocrevus and Kesimpta; if you really wanted one of those more expensive ones I don't know how it would go). My advice is to advocate for yourself and be honest with your neurologist. It sounds like you don't need this advice, but for example I was on less effective DMTs at first (I think this is a standard protocol when a patient hasn't had very bad exacerbations), and the adverse side effects meant I wasn't really adhering to my meds (skipping lots of doses, etc.). Instead of just telling my neuro that I wanted to switch because I couldn't handle it, I kind of kept it hidden thinking I would eventually adjust. Long story short: I didn't adjust and I had a bad exacerbation. With the new/improved DMTs available nowadays I never should have let this happen. Finally, my favorite resource is the MS subreddit (https://www.reddit.com/r/MultipleSclerosis/). I have found the MSers on there to be very knowledgeable, and have learned some really useful info through that group. They may even have Bay Area neuro recommendations for you. Wishing you all the best!

My husband (late 30s) was diagnosed with MS last year and his neurologist at Kaiser Oakland was Dr. Fan, who I think was trained at the UCSF MS Clinic. He was able to get MRIs quickly and begin Rituximab within 1 month of diagnosis. We ultimately decided to switch to insurance a few months later so he could go to UCSF. He's now on Ocrevus, which is similar to Rituximab, and his neurologist (one of the residents) is good. The admin side of being at UCSF has been a bit of a headache and there's a lot more work on our end to make sure that radiology gets the MRI order, payments are received, etc. He makes the trip to SF for appointments but can receive the infusions in Berkeley. He's also part of a couple clinical trials, which is one reason we were interested in making the switch. 

With Kaiser, I think his specific insurance covered the infusions so all he had to pay was the copay. I can't remember what portion insurance now covers with UCSF, but he pays his out-of-pocket max each year. 

For us, the unpredictability of MS progression coupled with having a young family makes the cost (and added complexity) of UCSF worth it. We are comforted knowing there is an entire team of specialists and researchers that we now have access to. 

MS is a different disease for everyone, but I echo the advice in the other comment - even if your episode is not very bad, get on the most effective DMT that you can, as soon as you can. As far as resources, couldn't agree more about the MS subreddit - it's a really active and supportive community. I've also found Dr. Aaron Boster's youtube videos really helpful in learning about the disease. My heart goes out to you, best of luck! 

I was diagnosed with MS almost 30 years ago and have had fabulous care at UCSF MS Center. They immediately put me on a DMT (not much to choose from back then:) and have continuously changed DMTs whenever needed to manage my symptoms. I currently do twice a year Ocrevus infusions. 
I honestly believe I would not be walking today without their support. With UCSF I was able to have and raise children, work full time, and lead an active life. After 30 years I am proud that MS has not limited or defined who I am. 
My neurologist is Dr. Emmanuel Waubant, but all the doctors at UCSF MS are wonderful. Unlike Kaiser, I feel UCSF never based its decisions on “cost” but on what will work best for the patient.
Good-luck.

I have MS and am with Kaiser Oakland. My experience with Kaiser has been very good overall. I personally don't feel that Kaiser makes treatment decisions based on cost. You do hear bad stories from people with other types of insurance who have their doctor's treatment decisions questioned or denied by the insurers, but it's not like that at Kaiser. I went directly to the most aggressive treatment without any pushback at all. That's not to say that you don't have to advocate for yourself, because you absolutely do, so I encourage you to learn as much as you can about your diagnosis. And in any case, as others have said, pass up the lower efficacy treatments and go directly to the most aggressive treatment possible. This is your brain we are talking about. It used to be standard operating procedure to start newly diagnosed individuals on a lower efficacy treatment and wait for them to fail before switching to something more aggressive, but every relapse does damage and fortunately this school of thought is starting to die out. As far as specific neurologists go, after 5 years I'm on neurologist #4 as they keep leaving, but they have all been pretty good (some have been better than others, but you can pick and choose if you are not happy). I have Dr. Fan now and I like her. Kaiser also has an MS specialist in SF, but I haven't felt the need to ask to switch. And of course being with Kaiser makes it all super convenient to stay on top of all the labs, MRIs, medications, and all the other stuff that goes along with an MS diagnosis. The last thing I would say is that MS sucks, but if you have to get diagnosed with it, it's GREAT to be diagnosed now, in the treatment era. Please feel free to reach out to me if you like! I remember well how stressful the first year or two were.

Best wishes for you and your family as you navigate this challenge.  
I was dx’d with MS at age 51, exactly 10 years ago.

My experience has been entirely in the UCSF ecosystem.  I believe that I am receiving the best care available.  I have no perspective whatsoever about Kaiser.

I am a member of the Patient Family Advisory Committee for the UCSF MS & Neuroinflammation Center.  One of our roles in this capacity is to connect with newly diagnosed patients to provide peer support and help navigate the process.

I would love to have the opportunity to speak further.  Please reach out to the moderator of this site for information to contact me directly.