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gone03

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Joined
Jun 7, 2013
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Diagnosis
06/2013
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State
TX
Hi,
I have not posted here much, mostly because of my frustration about having my Rheumatologist insist that all I truly have is Fibromyalgia with a few other unrelated autoimmune issues. It's frustrating for me not to have a diagnosis that my other doctors generally believe exists. I'm not a complainer and my wife seems to understand that I really do have some sort of physical and cognitive issues.
My question of curiosity is: Has anyone been tested as HLA-B27 positive? had bouts of Uvitis, SICCA syndrome or been occasionally diagnosed with reactive arthritis? My blood Rheumatoid Factor has consistently between 250 and 340, (normal is around 14) but without having my other blood test showing positive signs of inflammation, I have been told that it really doesn't mean anything by itself. What dose your doctor say about you having other (unrelated?) autoimmune symptoms?
What ever I have... IT REALLY SUCKS!
Thanks
 
Hi,
I have not posted here much, mostly because of my frustration about having my Rheumatologist insist that all I truly have is Fibromyalgia with a few other unrelated autoimmune issues. It's frustrating for me not to have a diagnosis that my other doctors generally believe exists. I'm not a complainer and my wife seems to understand that I really do have some sort of physical and cognitive issues.
My question of curiosity is: Has anyone been tested as HLA-B27 positive? had bouts of Uvitis, SICCA syndrome or been occasionally diagnosed with reactive arthritis? My blood Rheumatoid Factor has consistently between 250 and 340, (normal is around 14) but without having my other blood test showing positive signs of inflammation, I have been told that it really doesn't mean anything by itself. What dose your doctor say about you having other (unrelated?) autoimmune symptoms?
What ever I have... IT REALLY SUCKS!
Thanks

Oh my gosh, I am so sorry. Oh I know that frustration. Something I noticed with two different doctors. They told me I need a "Good" Rheumatologist. Finally I asked, um, are they listed under G? I was just SO frustrated. Just my thoughts, see if you can find another Rheumatologist. Check their ratings, under I think it is "health grades" and there is another one. You can get some good insight by viewing patient comments.

As far as the HLA-B27, from what I understand it is a genetic marker for Ankylosing Spondylitis (AS)

My test result was negative. From what I read, and below is one of the links, testing positive for the genetic marker, doesn't mean you have AS, but the below site, has a wealth of information:

Link Not Allowed!

The below is a portion taken from the above web-site in reference to HLA-B27.

"Although the exact cause of AS is unknown, we do know that genetics play a key role. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people of European ancestry with AS. However, scientists know that other genes, along with a triggering environmental factor, such as a bacterial infection, are needed to trigger AS in susceptible people. "

I would see if you could get a 2nd opinion with a different Rheumatologist. Especially with your RF results.

Hoping for the best for you, and when you do your research for another Rheumatologist, take special notice as to other patient's experiences.
 
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Thank you Lyme Suffering,
Unfortunately this is not my first Rheumatologist. I was told by a one Rheumatologist that: "if your blood test doesn't show it, I can only help you with your symptoms". I guess that this makes sense but it "feels" sort of unsatisfactory to me. I was also told by one Rheumatologist that if you show hypersensitivity in the pressure test on your limbs and the blood test are negative, Fibromyalgia is the only diagnosis that he could suggest. Maybe I share this feeling with others, but I feel like something else is going on. HLA-B27 is the reason for my Uvitis and SICCA syndrome. I failed to mention that I have neuropathies in both my hands and feet and that I have had 2 very necessary surgeries on each wrist to take pressure off of both my Median nerves, not all surgeries were the typical type of carpal tunnel surgeries. Diabetes and Lyme's disease have been ruled out.
Thank You,
Painfully Frustrated!
 
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