Visit with new rheumy

[hoping]

Think I finally landed a good rheumy and its all http://thanks%20to%20this%20board!  On the recommended list of rheumies for certain cities, I had seen that Jen recommended one in Kansas City area.  We PM'd and I got the info on Dr. Koenig.  Had the appt. today.  He was the first doctor not to dismiss me or placate me or drill me.  He LISTENED, imagine that??  Asked valid questions.  Reviewed test results.  Did a totally thorough exam. 

He is widening scope of what this may be and currently is testing me for Celiac's.  He is getting in touch with GI surgeon that scoped me to see what she biopsied.  There may be a need to re-scope me with upperGI test, but not likely if she biopsied what he needs.  He will then see me back and I may need another lip biopsy since mine is a 3 of 4 so is not conclusive for SjS, but is in the probable category.  He could not understand why other rheumy wanted biopsy slides from Mayo when he already had the revised report from them.  When he heard that other rheumy had diagnosed it fibromyalgia, he said sarcastically, "well how does that explain the dry mouth?"    It was clear he had no use for that rheumy's opinion.  When I told him I had a 45 lb. wt. loss he said "does your primary care doc. have any concern over the wt. loss?"  I told him up until lately, he has not cared.  But recently he said, it was of concern and we set up a well woman exam and mammogram.

Meanwhile, in one mo. rheumy wants me back to go over the tests and if nothing is there, next step will probably be the lip biopsy.  Since Celiac's can mimic MS  and since I have so many neuro symptoms, along with some digestive issues he wants to make sure it's not this.  I think with the dry mouth and eyes, it will likely be SjS, but I'm ecstatic that someone cares enough to get to the bottom of it and not just shove me off to someone or some place else!  I feel confident I will at least get the best possible diagnosis out there, not just someone's best guess. 

Karin 

[Chana M]

Hi Karin

That's great news!  I'm so pleased that you found a rheumy who not only listens to you but also sounds competent. 

It doesn't seem right that we should be surprised and delighted when a doctor actually 'asks valid questions ... reviews test results ... did a totally thorough exam ...' as you say.  But we are, and he did.

I'm so pleased for you.  Hope you're not too exhausted after the hospital visit.

Take care

[Collie]

Glad to hear you finely have a doc who not only listens to you, but actually believes in what you say. I often wondered why docs think we have all this money to waste on doc and frivolous testing when according to the news, most of us cannot afford house payments. Anyway... I thrilled you have a competent doc.

Collie

[Scottietottie]

Karin that's great!  It's ironic when we get excited about someone telling us we're sick - isn't it? The validation is so important though. Sounds like a good rheumy. Hope tests get set up, results come back fast and treatment can commence.

Take care - Scottie 

[irish]

Karin, Isn't it awful what we all have to go through before we find a good one!!! It is well worth it when we do find a good doc though. Good luck with your testing. Irish

[JenJen]

Yay, Karin  ---I emailed you to ask about your visit with Dr. Koenig.  SO GLAD he is doing right by you.  I tell you, I miss him.  My rheumy here is nice but not nearly as thorough or willing to think out of the box.  I'm finding that out with all the new problems with the neuro junk.  It's like he just blinks at me, sends me to a neuro, who also blinks at me.  Negative tests and all.    Keep me posted!

Jen

[wednesday mc haggis]

Karin

wooohooooooooooooo!! thnak goodness for a good doctor!!

ive 3 out of 4 signs for SJS, rheumy has said fibromyalgia, and i said what about the dry mouth ??  , im going to get myself a lip biopsy also, wish all docs would sing from the same hymn sheet, glad trulu glad you found a good un

T x   

[pudmott]

Hey Karin

Good to hear you got a good doc that will listen and do something for you . thats half he battle.

Keep us posted with how you are going


Pud

[Patze]

Wow Karin, I'm sure glad you got a good one!  Now where can I get one like him?

Take care -

Patze

[hoping]

Hi all,
Rheumy is sending me to GI specialist.  They talked by phone and he felt there was strong need for me to see her. Luckily I called right away and there was a cancellation for tomorrow, otherwise we were looking into April.  Test for Celiacs was negative.  Reflux is always a problem now when I lie down, wakes me up, interupts what little sleep I'm able to catch.  I sleep propped way up and don't eat after 6pm.  Rheumy also is decreasing Prednisone down to 10mg.  Can't wait to see him back and see if I can get more info on where we are going with all this.  Spasticity (painful jerking muscles) is worse despite increasing my implanted pump and oral meds, nothing seems to work on it late at night, into the night.  Was able to get off the walker and only using cane as day wears on and knees start hurting more.  Son has a concert next week and it's in the evening in gymnasium.  I am so hoping they will have some chairs set out and I can make it without too much pain and fatigue.  I am usually so bad with neuropathy pain by evening.  But excitement of seeing him play will certainly overweigh that.  He plays french horn (and trumpet).   
Karin

[ohiolady]

Karin,

Thrilled for you!!!!!!!!!  Good doctors are not always easily found and I've just decided if a doctor brushes me off then that is it.    I sure hope that he will be able to help you and set up a good treatment plan so that you may feel as well as possible.

Anna

[hoping]

New rheumy is very comprehensive.  Still undergoing tests. Negative for Celiac's. Rheumy wants me to have upper GI scope repeated and this time get biopsies to check for Whipples (infection in GI track that can spread and affect CNS).  I doubt it's this.  Then a lip biopsy I imagiine.  He brought my Prednisone down to 10mg and the joint and muscle pain is much worse, back on the walker.  Just wish the whole process was over in a day, you know?
Should be used to waiting by now.  But now that I have a doc. who wants to figure it out, I'm all the more anxious to get this all figured out.

Karin