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Crohn's Disease
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Posted 10/15/2010 7:08 AM (GMT -7)
went to gi doc yesterday to find out about pillcam and c scope  all normal great right. But I am still very sick

alot of d and loosing weight  and haaving tingling in hands and feet and some muscle spams??? Gi said that

he thought that they have misdiagonised me that I don't have crohns because their has been no inflammation in bloodwork or bios since 2009. lately my joints in fingers hurt in joints and my mouth has really small uclers white inside plus contast fatigue.. anybody have any of this with crohns?? Any suggestions about what to do??? Thanks in  advance... Really down!!!!

Posted 10/15/2010 7:13 AM (GMT -7)
The joint pain, mouth ulcers and fatigue are all VERY common with a Crohns flare. I have and many others too, have had Crohns flares where blood tests all come back normal. I think you probably might want to get a copy of your tests and take them to another GI for another opinion. I am sorry you are suffering so. Hugs!
Posted 10/15/2010 9:15 AM (GMT -7)
i agree with nanners, in fact i have the same situation. blood work from this week does not show inflamation, but I have stomach pains, lost a lot of weight, ct scan with dye shows inflamation and narrowing. plus 2 weeks ago felt just awful with join pains, especially the knees. The blood work is just a test. as my doctor told me yesterday, she treats the patient, not the test. and she said everyone is very different. hope this helps.
Posted 10/15/2010 11:58 AM (GMT -7)
thanks for the replies is really hard to hear we think we missed diagoniosed you and that theres not much we can do,  When your sick . just wondering has anyone ever had tingling in hands and feet form crohns or could this relly be something else making appt with clevland clinic to get second opion. maybe they can see

something or at least confirm or deny crohns..thanks  for being so kind

Posted 10/15/2010 1:42 PM (GMT -7)
The tingling hands and feet could be from low B12. A B12 shot will help this. You really should talk to your doc about this and get your B12 and Vitamin D3 levels checked, or you could develop permanent neuropathy in your hands and feet. Good luck!
Posted 10/15/2010 2:27 PM (GMT -7)
My bloodwork usually comes back normal unless I am way out of control with a flare... Right now I am having a mild flare and my bloodwork looks dandy - but my joints hurt, my guts are killing me, and it is hard to get out of bed in the morning from the fatigue...


I would get another GI and possibly a visit to a Rhuematologist. My Rhuemy is pretty great - she knows what is going on with my CD and she gets it - she also is much more available than my GI - so she is the person that re-ups my Rx for Remicade and monitors most of my labs. My primary doc is pretty good too. My GI doesn't see me much unless I am borderline ready to go to the E/R, because when I go see him we have the same conversation every time.

GI: "Well, we can put you back on steroids"
Me: "Nope, not gonna happen - not unless I am in the E/R"

/OD
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