Diagnosis confusion - your help so appreciated! RA?

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coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 9/25/2008 7:04 PM (GMT -7)   
Hello Everyone ! I hope you are all doing well. I am having a rough time in getting a dx and was hoping someone can help.

To make a long story short, I am 39 y/o woman; I am HLA-B27 +, have IBD (eosinophilic gastroenteritis) . about 4 years ago I developed joint pain, stiffness and swelling which has spread thru my feet, ankles, hands, wrists, elbows and shoulders. It keeps spreading thru more and more joints; I have walnut sized lumps on the outside ankle bones, a mass the size of a silver dollar on the top of my hand where the hand bones feed into the wrist. One of my knuckles is twice the size it should be. My GYN and believe it or not, my DENTIST (who saw my hands) say it's RA. Only my PCP gave me Plaquenil. I finally had x-rays which are fine; I am negative for RA factor but Sed is 29 and c-reactive protein is 5.9. My last round of this took 15 pounds off me. I am exhausted, in pain and take up to 20 Advil a day to function; even that does not help the pain that much. I now have trouble walking, even squeezing the ketchup bottle hurts!

Here's the problem - my old rheumy waited several years before finally kind of saying it was RA. He did not think Plaquenil was helping so he took me off it. He left and now new rheumy says I am fine and wants to give me me meds for fibromyalgia! HUH????

I think they are afraid to diagnose because I have multiple disorders. Has anyone else been thru this?

Thanks so much for taking time to help!

Coffeefiend


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 9/25/2008 7:32 PM (GMT -7)   
Fiend - My suggestion is to get a second opinion from another rheumatologist. Anyone that has IBD and is HLA B 27+ that displats your symptoms deserves a competent evaluation with a rheumy familiar with spondyloarthropathy [SpA] associated with IBD. Do you have lower back pain? If so, have you had a MRI of your sacroileac joints to look for inflammation? Sacroiliitis is a classic symptom of SpA and ankylosing spondylitis. both associated with IBD.

Fortunately, I have a first rate rheumy that immediately diagnosed me with SpA. Then my diagnosis was changes to AS when sacroiliitis was very evident on my MRI. I have enthesitis too. That is inflammation of the tendons where they insert into the bone. It can be very disabling.

A neg blood test and negative xrays for RA should have the rheumy looking towards SpA with your elavated CRP. Get a new one!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

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