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Old 01-03-2012, 03:37 PM   #1
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Ganglion Cyst, Really RA Nodule?

Hello everyone,

I am new here and have not been diagnosed with RA but I have some questions. I fell ill in Feb of 2009 and since have been diagnosed with Chronic Fatigue, PoTs and Chronic Epstein Barr virus. All along I have felt that there is more wrong with me than my diagnosis. I just keep going with the flow and being patient with doctors. I have had test after test. About 9 months ago I noticed a bump on the top of my hand about the size of a BB and now its about the size of a pea (little bigger) and its kind of round/oval shape. It is not at my wrist. When my fist is closed its about mid hand and when my hand is open its about 2 inches from my wrist bone. I have been told its a Bible/ganglion cyst but I am not so sure. I feel like my doctor is some what concerned about it but keeps saying "keep an eye on it" and "it seems to be growing from a tendon" I have had my RA factor tested and it comes back negative. I just don't know anymore and I am so tired of being sick. Thank you so much for any words of advice. Has anyone else been told they had a ganglion cyst and later discovered it was really your first RA nodule???

 
Old 01-03-2012, 05:49 PM   #2
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Re: Ganglion Cyst, Really RA Nodule?

RA nodules are found strictly around joints. And not everyone with Ra even gets them. What you have certainly sounds like a ganglion cyst on a tendon on the back of your hand......that is exactly where they are found. The back of your hand is all tendons.

I'm sorry you have been "doing the rounds" with the docs trying to figure out exactly what is wrong. A negative RA factor doesn't mean you don't have RA. At least 25% of those with Ra don't have a positive Ra Factor or even a positive anti-CCP. The rheumatoid factor is a lousy test in that 5% of the general population has a positive RF but no symptoms of RA and the percentage goes up as we age to about 20% being positive in the elderly without any signs of RA. So that is why you need to keep working with the docs.

Sero-negative RA is a very common presentation and in that, you don't have any of the specific tests for Ra but instead, show the disturbances of the immune system that would accompany RA but not the specific tests like RF anf anti-CCP. You would have a raised Sed Rate...normal is below 15(or 20) and is consistently raised. The while blood cell count would be raised as if you have a mild infection...maybe as high as 10,000 to 12,000(norm is below 8,000) and anemia is usually present....a Hematocrit and Hemoglobin both below normal. That alone with the specific joint problems of RA, make a diagnosis without any of the specific tests.

RA and Lupus and some of the other auto-immune disorders are diagnosed by "criteria" and not specific tests. RA has 7 diagnostic criteria and you need to have 4 of them. And blood work is only 1 of the 7.

So hang in there and sooner or later, your doc will have a clear enough pattern of symptoms and tests that will put together the criteria for diagnosis. I hope they figure it out soon.

Hugs..............Jenny

 
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Old 01-05-2012, 10:11 AM   #3
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Re: Ganglion Cyst, Really RA Nodule?

Hello to you and Happy New Year!

Jenny, as always, said it right. I had Ganglion Cyst twice, my sister in law had it too. You may be very surprised but you know what Hand Ortho told her to do? To put a heavy book on top of the affected hand and hit it. Do you know that after this "treatment" this cyst disappeared?
Mine got big and one day I noticed it was gone. Although one surgeon said it needs to come out, when i went for second opinion, the other surgeon laughed and said not to be silly, it will go away by itself. Some surgeon very knife happy as we all know.

Like Jenny said, RA cysts are not very common in RA patients. They very specific, most DRs recognize them. I do have many of them, pea sizes around joints and each time I get checked by doctors, they all ask if I ever been diagnosed with RA.

Even though you experience fatigue and pain, not necessarily it can be related to RA. Did you ever been checked for Fibromyologa?
I suffered with it for so many years before I was diagnosed with Lupus and RA, it can make you feel pretty ill, although I was working 2 very demanding jobs with it and had 2 kids. My answer to it was to push yourself to exercise, this was the answer for me despite both knees surgeries, and body full of OA. Exercise brings these happy endorphins which make us very happy. Don't do anything strenuous, what you can do for at least 30 min a day, even its a simple stretches, yoga, all is beneficial to your well being, sweetie.

And another advice I want to give you based on my own experience: don't give up. Nobody knows your body better than you do, so please search for good and carrying doctors, go for second and more opinions until you will find the answers and be satisfied. After all, we have to be our own doctors.
Best wishes and hugs,
Moldova

 
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