It's systemic... does your doctor "get it"?

[susanfrances]

I am having a hard time finding a doctor for both myself and my daughter than really understands that CD is a systemic disease with extraintestinal symptoms. She has strep today (got sick 12 hours after my cimzia loading dose :thumbdown. Her joints hurt, she can barely get out of bed, her fever is 103, and she is sooo much sicker than a kid with a good immune system that gets strep.
If I have a bad rash with a flare, my GI sends me to the dermatologist; episcelritis to the opthamologist, UTI that won't go away b/c of my meds to the general practioner, joint pain... you guessed it... orthopedist. Enough co-pays! Does anyone see an immunologist or have any suggestions?

 

[Nica]

So far, my Rhumetologist seems the best at covering the bases. He gives LOTS of Biologics out in his practice and deals with all the side effects.

 

[susanfrances]

Thanks for the tip! I would not have thought of going that route- but it makes perfect sense. The cold weather here this week- with lots more on the way has made everythiing hurt a little more than usual.
Hope you are feeling better soon!

 

[Lisa]

My GP doctor is also a rheumy Dr.....so I have both bases covered!

 

[JoeUK]

Does anyone else get joint pains?

 

[STLGirl]

Does anyone else get joint pains?

Yes Joe, totally! Lower back, knee, feet-toes, shoulder! :frown:

 

[BLM]

Hey Joe, your tellin me my story.....so many problems, especially infections. And the COPAYS....can I get a break?? Its become incredibly expensive for my family this year with all our ER copays, dr copays, xray copays, perscription copays....and the list goes on....and I keep having more and more problems....ICK!! Your not alone.

 

[Entchen]

Joint pain...yes to that. Right now am limping lots, especially after sitting for even short periods of time. Am ensuring I exercise to be less stiff, although it sure does not help the pain.

Even my fingers are stiff and painful right now.

 

[StarGirrrrl]

Well my GI spent our whole last consult (revisist) saying IBS, IBS, i'm 90% sure it's IBS :rof: When I have been sent back after a Rheumy ordered a WBC scan which found inflammation in my bowels, and for the past four years my bloods always found raised CRP, and I won't start on the symptoms that didn't fit then, or the new problems I have developed now :rof:

So another vote for Rheumatology, god know what state (and i'm bad enough now) I would be in if that test wasn't ordered. Rheumy was the first Dr who went through my whole medical history from birth, all my bloods, questioned Mum etc. So so glad he ordered that scan. Was sent there after developing joint pain.

Who knows how seriously I will be taken when CD (because I am convinced it is) is confirmed, because they sure as hell are not listening now. Been counting on a diagnosis and treatment to get my life back but had to fight so hard to get to where I am now with Gastro, even with confirmed IBD, that I have doubts.

 

[Rebecca85]

I think my docs 'get it'. I went the other day with a coldy virusy thing and the first question was 'how are your bowels?'

 

[outlier]

I am all about the eye inflammation, it was my first symptom. So my docs get it, they have to.

My GI doc is one of my fav docs because he saw the eye inflammation and heartburn and actually was able to think outside the box.

Try a rheumatologist or ask your current eye doc if he knows some one who specialized in inflammatory eye (for a second option, most will help). then work backwards. ask the inflammatory eye guy who'd he recommends as your number 1 doc.

Even though all my docs (GI, GP, eye, Rhemy) know they are working with the same illness, i still end up with to many co-pays cause each part of me needs a lots of check ups.