finding a new doc

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medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/13/2009 2:54 PM (GMT -7)   
so i called the office of a guy in town that is supposed to be a crohn's specialist at the advice of many of you lovelies...not the doc specifically, but a new one....
i was told...he doesn't do second opinions...asked what was wrong with me and told to fax medical records and test results in and he would look over them and decide if he would see me...what the crap? I knew there might be a wait...but i didn't think i would be given the brush off?

any advice...should i move on...or consider the fact that he sees people from all over the world and is not an equal opportunity physician...he only takes the good cases...ironically i may have found my Gregory House?

Opinions welcome...

also have a new symptom...i think i have petichae on my upper and inner thighs??? anyone?

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 3:17 PM (GMT -7)   
Man, you just keep getting curve ball after curve ball, huh? I'm so sorry you're getting the run around.

And I totally understand some ambivalence regarding the situation - you want the best, but at the same time it isn't a good first impression to get the brush-off for sure. How long did he say it would take to "review" your file? If the doc's office can't give you a difinitive time for their answer, I would start the search again if I were you. I don't know... my instinct tells me that if I were in your shoes I would be finding another doc already because I would have been over-the-top irritated at the "no second opinion" scenario... but if you can hold out for a couple of days maybe it's worth it? I guess it wouldn't hurt to have another doc chosen regardless... you might not like this super-crohn's doc once you meet him anyway.

As for the petechiae... I am pretty unfamliar. I had weird rashes on my shins and thighs last year that felt kind of like razorburn and sometimes itched, but I never got a straight answer as to what it was (nothing simple or obvious like shaving, laundry detergent, food trigger, etc.). I benadryled myself every night before bed for a month or so and eventually it was gone. Could just be a freakish manifestation of your absorption issues...

I hope you get some answers soon MM... I know you have to be pulling your hair out over all of this. Getting the diagnoses, whatever it may be, is often the worst part of the ride. Try and keep your sense of humor, though... it goes a long way! Sending good thoughts your way.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/13/2009 3:26 PM (GMT -7)   
thanks ps...it is going to take a bit of time to gather all of the information and test results anyway....too many hands in the pot...

yeah i was thinking maybe its from my B12 deficiency...at least hopefully that and not low platlets from a bad infection or worse...

laughter is the best medicine! if only they bottled it!!

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 3:53 PM (GMT -7)   
that's right - I forgot one of your other posts mentioned the B12 thing... that could definitely be the culprit...

Are you making sure that YOU get a copy of all the parts of your file as you're going through all this run-around? It'll save you a lot of headache later on if you are in possession of your file as well. Plus it's fun to see what they put in there sometimes! My doc has a column for "Patient Appearance" and he actually put "Disgruntled" as an answer once. Made me laugh, anyway.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/13/2009 3:59 PM (GMT -7)   
haha...disgruntled...that's awesome...i can only imagine what mine will say...and no...i have not...but i am learning my lesson the hard way now!
ugh!!! any tips for timely retrieval?

goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/13/2009 4:01 PM (GMT -7)   
Just so you know, I'm going for a second opinion with an IBD specialist tomorrow and this doc wanted to see my records first before he would give me an appointment as well...
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 500mg 2x's daily cipro, 800mg xifaxin, 9mg entocort, Humira (started 3/23/09), synthroid
 


medicalmystery
Regular Member


Date Joined Apr 2009
Total Posts : 45
   Posted 4/13/2009 4:10 PM (GMT -7)   
thanks...i didn't know if that was normal...the receptionist said he sees patients, but doesn't give second opinions...guess its good i don't have a diagnosis yet???

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 4/13/2009 4:15 PM (GMT -7)   
The only way I get anything in a timely manner is if I tell them I will be there at 3 o'clock to pick it up. It's a pain, but I find it better than waiting around for them.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/14/2009 5:50 AM (GMT -7)   
Can you check in with your insurance company? Some of them have off shoots with nurse support and they can help you with trying to find a doctor possibly. I have found that when I make a stink with my insurance company they tend to move a little quicker. It might be to their benefit to help you instead of just writing checks to the hospital every month for your admissions. You may have to move up the chain of command a bit, but you might also get some names of specialists who can see you ASAP!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/14/2009 5:58 AM (GMT -7)   
I would send the records and see what happens. Maybe he screens patients so that he only takes those with cases too complicated for someone who is not a Crohn's specialist. It may be inconvenient, but if you can get in with him it will be worth the wait and effort if he really is that good.

The Gregory House comment made me smile! When I was hospitalized in December 2008 (which led to my Crohn's diagnosis) my daughter and I were discussing whether or not I would want House for my Dr. He gets to the bottom of things, but I would probably have ended up with a lumbar puncture and some other painful procedures in the process :)
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