SEARCHING FOR A DOCTOR IN NORTHERN CALIFORNIA, (OR POSSIBLY ANYWHERE IN CALIFORNIA)

Hi everyone, I have been searching for a doctor in Northern California who knows something about APS and I am failing. Doctors who say they "know", don't. I am north of San Francisco in Sonoma, County. Has anyone found a doctor anywhere in California who has made more than a cursory study of APS? This is so frustrating...

Many thanks, all.

16 Replies

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  • I found this stoptheclot.org/ on the right hand side of this forum. Someone else had posted and you might find some more info there.

    ALso Mary posted a while ago this link apsaction.com/ which might be helpful as well. They have a "find a doctor" in their menu so hopefully you find someone soon!

  • I have been looking at these lists and I'm not coming up with anyone. I contacted one doctor and his response was to recommend I find a hematologist unless I had a specific problem with my lungs (he's a pulmonary specialist). Why he was on the list with that attitude, I have no idea. What I'm really hoping for is a personal experience. Someone who will tell me that they've found a doctor who is the real deal!

    Thanks for your help!

    Mikki

  • Hi the link above was wrong, this is the one you need to look at: apsaction.com/ MaryF

  • Thanks, Mary. I have never found anything on that page that directs me to a knowledgeable doctor. There are links there to other support pages which are also limited in the doctor category. I'll take another look to see if I've missed something! Best, Mikki

  • APS Action as put in the page above now, rather than the link that was there before, contains some names in the USA for contact, beyond that, it is other members who can hopefully help you with localized knowledge in the USA, best wishes to you. MaryF

  • Yes, thank you! I am hoping someone with APS here in California will contact me and tell me they have found a doctor worth going to! Many thanks, Mary. Mikki

  • Hello,

    I don't know about northern CA but you have one of the finest autoimmune doctors in the US there in CA. A Dr Daniel Wallace. I believe he is in LA, but worth at least one trip to him, he has written many books, check him out. I first met him at out local lupus foundation where he was a guest speaker, amazing !

    Www.danieljwallace.com

  • Thank you, zzcat! I will look at his page. Have you seen him as a patient as well? Mikki

  • No, I have not as I am in Fl and go to my local who also referred me to Johns Hopkins, so go between the two on this coast. But I was impressed with two things about Wallace. One that he recognized an often missed link with a paralysis episode early on with lupus and the other with the creation of aneurisms. Both of these are Never mentioned by any doctors! He is a forerunner as far as I'm concerned and seems to be obsessed with the subject matter. I have often thought of going out for a consult. I don't think you will be wasting your time and at very least he might be able to steer you to someone in your area.

    Good luck and if you see him, please let me know how it goes.

  • Thank you, I will take it seriously and look into this. Best, Mikki

  • I live in the most NE corner of CA, Alturas. All I know is that if I need any specialist I am usually sent to Redding. Have your tried Redding?

  • No, I am just running internet searches and nothing there has come up.

    Have you ever seen a doctor who is very familiar with this disorder or are you just seeing a GP who prescribes your blood thinners?

  • You're right. I have not seen a doctor familiar with Hughes. Unfortunately there are only two doctors in the entire county of Modoc. Both older. Mine is 75, only works three days a week, and has not heard of Hughes. Like you, we try to inform ourselves via internet.

  • Indeed we do use the internet! I just want to deal with a practitioner who might recognize a symptom as being related to Hughes and not leave it to me to be the only detective. I am happy to collaborate with a doctor, but that doctor needs to know at least as much as I do! For instance, my target INR is between 2 and 3. I read somewhere that this might not be enough (based on what exactly, I don't know). Do I have someone who really knows and who I can ask? No. I am assuming that the target is correct, (what else can I do?) but it would be lovely to have someone to direct all my questions to and have some confidence that they know what they are talking about.

    Still hunting!

    Many thanks for your responses! Mikki

  • I see a rhuemy in Santa Rosa, Dr. Todd Hoefling. He is with Sutter Health. I'm not crazy happy with him, but he does know about APS. He did find that I has Sjogrens along with APS.

  • Thank you! I am in Guerneville and have Kaiser. I am willing to go outside the system to a doctor who knows something.

    What are you not thrilled with him?

    Mikki

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