Upcoming Appt with University Doctor - So happy I could cry

[dbab]

They have agreed to see me at the University Rheumatology department next month and I am just so estatic.  I will meet with a doctor and a professor doctor and probably go through the entire diagnostic process again.  I have been through so much with my rheumy and the history of my illness and my diagnosis that I'm at my wits end.  It's just a real long story but short story is that I think I'm on the verge of her undiagnosing me again anyway and I can't keep playing these games with her.  All my labs look good so she automatically thinks that I'm not sick, I still feel sick and I think meds can cause you labs to alter your results but I don't think she gets that.  My antibodies are still positive but now she is asking for a biopsy???  At this point, I don't really care if they (the Uni) undiagnose me and start from stratch (call me crazy).  I just feel so overwhelmed and that everything has been thrown at me with question marks.  My current rheumy has a good heart and I don't know how to tell her that I'm going behind her back to get a second opinion (never been my strong suit).  I just don't ever know what is going to pan out when I step in her office and it causes so much anxiety.  I think this is a good thing.

[Carolina]

Dear dbab:

YAY!!

Seeing good/great doctors in a University setting..............everyone needs that who has gone through what you're going through.

Honestly, whatever the outcomes, you will be further along in your journey, and have a GREAT resource when anything new/strange/changed/different pops up.

Which DOES seem to happen

Do keep us posted.

HUGS

Elaine

[dbab]

Thank you Elaine.   I'm very anxious and excited about my appointment.

[quiger]

Hi Dbab,

So glad to hear you are going for that appointment. It's too bad you feel like you are going behind your doc's back with this but remember, any good doc will understand that you would like a second opinion. I think that any time a diagnoses, or treatment, looks "iffy", a second opinion is a wise decision.

Good luck.

Hugs,
quiger

[dbab]

Hi quiger!  So nice to 'see' you! Missed you!

Thanks... I know what you mean, I will have to tell her eventually.  She's actually waiting on a call back from me on my decision to do a lip biopsy or not.  I'm not going to do it at this time with so many questions in the air so I will probably talk to her when I call her about that.

Hugs

[quiger]

Hey, I've missed you too.

Good luck and let us know what you find out. Hopefully this appointment will be very productive. 

Hugs,
quiger

[lynnmarie219]

Good luck at your upcoming rheumy appt! I'm so glad to hear that you were able to get into a University Medical Center setting....that's where I go to get many of my answers!

Keep us posted...

[hikerknees]

Hey dbab,
Good luck with your appt.  I go to a university setting and no one has ever mentioned a lip biopsy.  my doc wants to give me a med every time I mention a symptom, plus he's convinced I have or will get lupus.  Maybe the opposite of what you're experiencing, hopefully you will find a good balance, and some answers!

[dbab]

Thanks everyone for the support... I will let you all know the outcome when I have my appointment next month.  Today I have started a very specific symptom journal as I happen to forget everything when I get to the doctor.  I actually was able to find old notes of all of my old symptoms for years ago that may or may not help my case.  Yes, somehow I feel like this is something I should have done a long time ago but better late than never

[One and only]

Keeping notes of symptoms is good,, write down everything,, is anyone going with you as a advocate,,?,, its good to have someone with you to help fill inthe blanks you might leave out

[dbab]

I will probably bring something to jot down some notes... I will definitely have to bring my own notes so I don't have a "Doh!" moment after I leave realizing I forgot to mention something or somethings.

I will be going by myself most likely.

[Bucky]

dbab - since "next month" is just around the corner - I hope this University doctor will shed some light on your health issues and gives you some answers.  You've got to do, what you've got to do . . no one else will do it for you.  You have to be your own health advocate and if you feel you aren't getting what you need from your doctor(s), then you need to keep looking until you do feel you are being heard and treated.

Good luck and keep us posted.

Bucky

[dbab]

Thanks Bucky for the support.  "Next month" is actually May 13th so I have a bit of time until my appointment, I'm actually in no hurry as I'm still getting all my records and stuff together.  You know, I've been so frustrated and going back and forth with my doctor each time.  My husband was the one who suggested going to see a Uni dr. and I'm so glad he did.  I would love to have him there for me at the appointment but I don't take him to my appointments (I'm not sure how to say this without being mean), he's just not very diplomatic with doctors.  Now it would have been great to have him with me with my current now rheumy HEHE j/k.  He's in the law field and he's a very intimidating, challenging, and demanding person and mix that with the fact that my husband likes to be in denial that I'm sick and I don't want my first experience with a new, possibly "have the answers" doctor to go wrong.