just seen dr. koening at u of u. OMG thats so not what i was thinking when i went in!

[alexciasmom]

Hi all!!
well i got to see Dr. Kening at the u of u.
and it was a 4 hr appt. so what it goes dwn to.
is...
he said i am not 100% sure you have wg. you never had a byopsy to confirm. and your nose and ears are fab.
soo lets get all your records from hosp and dr. stromquest. then we are ging to do about 12 xrays. blood and ua.
myself and my team will review all and have you come in. it could be wg, fm, lupis, or many others. so lets get all your records and run a byop, ct, mri, bone dent, and nerve cond, sence no one has botherd to do any of this. and find out what is going on.
so now i sit and think this is good, but could be bad. and its another hury up and wait. yeah!!!
lol back to 0. but feel better about this doc than others yeah. thanks to you all for nagging me to see him, even if my ins will only pay out of network for him.. ouch

[pberggren1]

Good for you for making this important move. Koening is very good.

[mishb]

Wow that's very thorough.
I didn't realise that you never had any of these tests before.

I'm glad they are on to it now.

I hope things start improving for you

[Debbie C]

Glad you got a dr. that is really taking the time to find out what exactly it is that you have... Good luck with all the tests,hopefully it will turn out better than this (wg )

[vdub]

I had already been dx'ed with wegs, but went to Dr. Koening for confirmation. He's very good and very thorough. I spent 3 days at the U of U going through tests and he did re-confirm the previous dx. You can bank on what he tells you. Let's hope you don't have wegs.

After he re-confirmed me, I followed-up with a couple appts and I still send him my blood reports. On occasion, I'll send him an e-mail with a question and he always responds. Mostly, though, I leave the routine stuff and day-to-day maintenance with my original rheumy. That leaves Dr. Koening time for the really bad cases -- there's a lot of people who are worse off than me.

[Alysia]

Hi dede,
I'm glad that you are in good hands :thumbup:

good luck, lets hope it is not wg, but something easier, and then you will just jump to visit us, and tell us about you and about your sweet daughter.

[annekat]

Dede, I'm so glad you went to see Dr. Koening and you got such a thorough visit and a new perspective on what is going on! He really does sound great, and maybe I can see him someday. (Road trip!) And of course, like everyone else, I hope you don't have Wegs, and that what you do have is less serious and easily controllable. You will let us know, I'm sure!

[alexciasmom]

thanks all. i will come back and talk to ya all if i dont have wg. i love you guys. lexies team the packers, won 7-4. YEAH GO PACKERS!!! i am going to take some pics of the stuff i have done to my garden tomarrow. and i will post them yeah!!

[alexciasmom]

Dede, I'm so glad you went to see Dr. Koening and you got such a thorough visit and a new perspective on what is going on! He really does sound great, and maybe I can see him someday. (Road trip!) And of course, like everyone else, I hope you don't have Wegs, and that what you do have is less serious and easily controllable. You will let us know, I'm sure!
well we need to see what we can do to get you down here to see him!

[alexciasmom]

Good for you for making this important move. Koening is very good.
Hi my cuddle teddy bear. i miss yoiu...

[pberggren1]

I miss you too. I will try and call soon but I prob wont be home until Sept. some time.

[mishb]

I've been wondering lately how DeDe is going.

I hope everything is okay .......and I really hope that she didn't have WG afterall.

Phil, have you spoken to her lately?

[annekat]

Michelle, I was just thinking about her, too! I wish I could say I knew something. She was on my Facebook but I think she closed her account due to hassling from relatives or such. She has a challenging life in dealing with difficult people, it seems. I, too, hope that she doesn't have WG or anything as serious, and that Phil or someone knows something.

[pberggren1]

I will try and give her a call this weekend. Last time I called her a month ago she was doing okay. Maybe I will ask if she wants others to have her number as well.

[annekat]

I was hoping she'd get notified of these posts to her thread and respond. DeDe, are you out there?

[sheasheasmom]

I had already been dx'ed with wegs, but went to Dr. Koening for confirmation. He's very good and very thorough. I spent 3 days at the U of U going through tests and he did re-confirm the previous dx. You can bank on what he tells you. Let's hope you don't have wegs.

After he re-confirmed me, I followed-up with a couple appts and I still send him my blood reports. On occasion, I'll send him an e-mail with a question and he always responds. Mostly, though, I leave the routine stuff and day-to-day maintenance with my original rheumy. That leaves Dr. Koening time for the really bad cases -- there's a lot of people who are worse off than me.


I have had almost the exact same experience with Dr. Koening as vdub. Koening is terrific and thorough and will find what out what is going on with you. Best of luck to you. Getting a true diagnosis is the first step to healing.

Susan
Diagnosed March 2013