Ucsf

[NikkiNicole]

Does anyone on here currently see Dr. Chen at UCSF? I'm going to be calling the office down there on Monday morning. I have my most recent blood tests ready to go! I even have the rheumatologist finally on board with agreeing that I do have this condition.
I don't have a conclusive tissue biopsy to back this up but the agony in my joints, the sinus agony, the cough ... it's all getting to be too much to handle. Today is worse than ever with the pain.
I'm currently supposed to just take 20mg of Prednisone a day and call him mid-week and let him know how I'm doing.
Even with a diagnosis I feel like I'm still going to be fighting them like crazy!

[pberggren1]

I don't know of a Dr. Chen but I do know of a Dr. Chung at UCSF. She is very good.

[annekat]

I'm sure it is Dr. Sharon Chung you are thinking of. I've heard nothing but good things and know that someone on here goes to her and has posted about that not long ago. I'm glad your rheumy is finally coming to his senses. You need to be on an immunosuppressant along with the prednisone. I hope you can get in to see her soon!

[NikkiNicole]

I came here on my cellphone! Autocorrect changed it to Chen because there's a Chen in my address book. Woopsie!! I even have the post-it right here on my day planner that says Dr. Chung!
Sometimes ... I tell ya ... I feel so out of it.
Today my hip, ankles, wrists and knuckles are screaming at me, as well as pressure behind my eyes. I can't even touch the area below my eye (where dark circles go) because it's so tender.
I cried this morning, so tired of the pain and walking like I can't bend anything, so tired of feeling like a Mack Truck ran me over, so tired of coughing, sneezing, runny nose, sinus pressure, headaches stabbing me in the temple, confusion, etc.

[annekat]

Oh, I've seen some crazy things on auto correct. Not your fault! All that joint pain and the eye stuff, plus the the high ANCA reading, the stuff going on in your nose, etc., should give Dr. Chung plenty to work with! I hope you can switch over to her soon! Your doctor needs to admit that this is over his head and Kaiser needs to see that you need a specialist and they should be prepared to cover it.

[TommyG]

I see Dr Chung and have only good things to say about her. I'm glad you are calling her soon. She once told me to email her if I was having a hard time getting in to see her. Her email is listed on the UCSF website sharon.chung@ucsf.edu. I was in bad shape a couple years ago; severe pain, no energy and unable to work. I now back working full time and enjoying life again. this would not of been possible without my two wonderful doctors. Sharon being one of them.

[NikkiNicole]

Oh my gosh, TOMMY! Thank you. My husband had told me to write down to the office with my symptoms and blood test results and see if they would then see me.
I am in love with this forum. I feel really and truly alone in life with what is going on. I work in law enforcement so everyone is all about running and joining 5ks and up ... and I was too, until this and now I feel like the world has left me behind.
I feel like I am completely alone. My husband doesn't deal well with touchy feely and when he's stressed he finds projects to do. So, he's been busy. Of course, we did just buy a house that needs work so at least he's doing something for both of us. He says he wants our house to be a comfortable place for me.
But, I feel horrible that he's doing it all alone.
I'm supposed to tell my rheumy Wednesday if I"m feeling any better on Prednisone. I'm not. And, I truly doubt I would have in that short amount of time. He keeps forgetting half the symptoms I've told him. He said he wants me on pred only because I only have joint pain.
WHAT? Are you not listening?!
Anyway, I'm so grateful to this place. It's the only place in the entire world where I can talk about how I'm feeling and everyone completely understands!!!!!

[annekat]

Nikki, this is such a great example of the quality of this forum. We would ALL be lost and alone and half of us might even be dead without it!
I think we can all be proud and supremely grateful to be a part of it. I have been involved in several forums, not for health stuff, but for car repair, pottery, stuff like that, and while they are good ones, I have NEVER seen anything on the internet to equal the quality of this forum! It's just too bad that we all have to have Wegener's to have found it in the first place, but I have often said to myself that it is the ONE GOOD THING about having Wegs!

[mishb]

Nikki, this is such a great example of the quality of this forum. We would ALL be lost and alone and half of us might even be dead without it!
I think we can all be proud and supremely grateful to be a part of it. I have been involved in several forums, not for health stuff, but for car repair, pottery, stuff like that, and while they are good ones, I have NEVER seen anything on the internet to equal the quality of this forum! It's just too bad that we all have to have Wegener's to have found it in the first place, but I have often said to myself that it is the ONE GOOD THING about having Wegs!

I have to agree and it is also the reason that I am still here.........maybe not, but I like to believe that if I didn't receive all of the information about WG, that I read or asked about on here, that things cold have gone terrible wrong.
I also am on a few - a Lupus one and an RA one. I must tell you that the people on those just don't have the friendliness or the humour or the love that everyone (yep, all of you) have on here.


Nikki, I hope you get to see Dr. Chung soon. She sounds awesome and will be great to have her on your side.