SF Bay Area Doctor Referral Please

[katyjo]

Hi,

I'm feeling really anxious and sad about having dry eyes and very likely SS.  I've had neck pain for a long time, that has been ignored.   I am the kind that don't feel comfortable going to the doctor.   I've been in to see my Nurse Practioner at  my OBYGN office a few years back.  I don't know where to start.  I haven't even talked it over with my husband yet but I know I have to look at our health coverage.  My husband is self employed and we've been relatively healthy so we have high dedectible.  I'm afraid that insurance coverage will be denied or premium increased once I am officially diagnosed with SS.  Maybe I should get a good insurance before I be officially diagnosed.  What do you think?

Please refer me to a good Rhuematologist and tell me why you like him or her.   If you have a name of Health Insurance that has been good, please share with me. 

Thank you so much. 
Katy, 46, mom of 2 grade schoolers

[Linda196]

Hi  Katyjo, welcome to Sjogren's World.

i"m afraid I can't be of much help with either insurance or a doctor, because I'm in another country, but I do agree that if you can, now is the time to optimize your insurance coverage, before getting "labelled" with a diagnosis that would become a "pre-existing condition" if you tried to upgrade later.

One caution though, be careful with the fine print, to be sure that anything diagnosed within a specified period of getting the insurance will still be covered...some policies make you wait 3, 6 or 12 months for certain coverages on a new policy.

[Dolly Dimples]

  Katy,
        So sorry to hear that you  think you have SS,  I know what your feeling like, we have all been there, and it's not a nice place to be!

       I'd try to get prepared before any official diagnosis, sorry I am not in US, so cannot recommend anyone to see.

Just want to wish you well, and you will get to cope with this , hard at times ,but come here when and if you need someone to hold your hand ..

    Best Wishes, Dolly x

[Patze]

Hi Kayjo,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of information.

Do you have a GP or Internist by chance?  Maybe your children's pediatrician can recommend a GP?  That's where I would start.  Get some basic testing done, see what the doctor thinks, and go from there.

There are lots of insurance companies and I'm not really sure what a good one in Bay area would be (I'm on the other side of the country).  Do you have an insurance agent?  If you do, can you call and ask some questions about the policy you already have?  

Again, welcome and take care -

Patze

[aprildawn]

Katy,

I see a wonderful Rheum. in San Fran. Her name is Nancy Carteron. She wrote a book on Sjogrens too.  She is very knowledgable and sympathetic.
I would definitely get your inc in order though, it all adds up very quickly.  You can find her online byjust googling her name.

Good Luck,
April

[katyjo]

Thank you all for responding.  I would feel that I'm in good hands if my doctor was Nancy Carteron.  I'm going to get her book and see what I can do to see her.  In the past, I think my OBYGN office didn't know what to make out of my mild seeming health complaints.  I just stopped seeing them.  This year I was experienced burning pain in my neck, head, and my lymphs felt tender but symtoms always pass.   I have often searched myself on the internet without finding anything that match my symptoms without a doubt.  My eye doctor diagnosed me with dry eyes and that didn't seem so terrible until I looked at the Systane website and I knew I surely had SS.    I have yet to talk to my husband. 

I hope I am healthy enough and still around to finish my job of raising up our girls.   Can you share how long you have been living with SS? 

Bless you all,
Katy,   

[Scottietottie]

Hi Katy 

Welcome to Sjogren's world. SjS is not terminal - just interminable. You should be able to raise your girls just fine. I started with 'symptoms' shortly after my second child was born and that was 1980. I went on to have 2 more children, so that was 4 altogether.  Although I saw various docs I didn't get a dx of SjS until 2004 by which time my kids were pretty well grown.

I work part time and am lucky that I can afford to do that. SjS progresses slowly, usually and for some it doesn't progress much at all. It's a very individual disease and you may never experience quite a lot of what you read about in here.

Take care - Scottie 

[Billydude]

I see Dr. Carteron as well in San Francisco.  She is very nice and obviously a specialist in Sjogrens as she wrote that book.   I like her as I can get concerns or questions answered by email.    She has some affiliation with UCSF and refers people to the SJogrens study there if you like.
Steve

[Billydude]

One more thing Katy?   You have no insurance now?   No so easy to get with pre-existing conditions.

[katyjo]

I am thankful to have found this board.  Scottie, you made me feel a bit hopeful.  I was counting how many years I need, and thinking about who I can get to replace me.         

Bless you all,
KatyJo 

[Patze]

Hi katyjo,

It's okay to be scared, all of us have gone through it at one time or another.  I've only been dealing with this mess for four years, but some of the members have been dealing with it for decades now.  It can be tough, but hang in there, okay?

Like Scottie, I still work.  You'll find several of us still work, wether it's part-time or full time.  And like a few others, I'm a singleton, and I need to help keep the doctors gainfully employed in my area.

Come often and keep us updated, and let us know what the doctor has to say.

Take care -

Patze

[Scottietottie]

Hi Katyjo 

Seriously - I'm not trying to minimise Sjogren's - but its not terminal.

Take care - Scottie