Discussions By Condition: I cannot get a diagnosis.

For those who have undiagnosed arthritis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: missg2u2
  • August 21, 2012
  • 01:43 PM

Hi there,

Since the age of 13 (I am 47 now), I have had random joint swelling and pain which seems to have a mind of its own. It shows up when it wants, for however long it wants, and randomly chooses one or more joints when it wants. I have consistantly come up with negative test results for every form of arthritis (including lupus), and my exrays are perfect. Also, I recently took the western blot test for Lyme and it also came out negative (which , false negative often happens even for those who actually have Lyme. Being tested a few times can often times reveal the truth).

This most recent flare was a doosey, its lasted 5 months, and often times I could not walk on my own due to joint weakness and pain. So, I became obsessed with trying to figure out what I have. It wasn't "nothing", even though the tests say it is. The Doctors started to look at me -and treat me- as if it were psychsomatic! Which I also had to research to take an honest look at myself (there actually is a syndrom called psychsomatic rheumatism). My personality is not the type to enjoy people worrying and Dr.s caring for me.

In the mean time, sitting my life away with a laptop, I stumbled across a rheumatism that I had never heard before, called Palindromic Rheumatism. Keep in mind, it is supposed to very rare, that's probably why we've never heard of it. Nevertheless, as I read, it sounded just like me. Rapid onset and remmission of one or more joints... Well, here, let me copy and paste a short explaination from wikipedia. (To get to the nitty-gritty, the official PR website is: (http://www.palindromicrheumatism.org/syptomsanddignosis.shtml):

"Palindromic Rheumatism (PR) consists of sudden and rapidly developing attacks of arthritis. There is acute pain, redness, swelling, and disability of one (usually) or multiple joints. The interval between recurrent attacks is extremely variable and how long the attack lasts is also variable. There is no joint damage after attacks."

"Due to the symptoms of Palindromic arthiritis and the nature of the attacks, diagnosis can be difficult or take time. The symptoms can be similar to many other forms of arthritis or other auto-immune diseases. It is often a case of eliminating the other conditions before getting the correct diagnosis due to there being no specific test for PR diagnosis."
"No single test can confirm a diagnosis. A doctor may make a diagnosis based on medical history and signs and symptoms. Palindromic rheumatism must be distinguished from acute gouty arthritis and an atypical, acute onset of rheumatoid arthritis (RA). Without specific tests (such as analysis of joint fluid), it may be difficult to distinguish palindromic rheumatism from other episodic joint problems."

I hope this has helped someone. The pain and suffering you're going through is real! And it's called something!! If all test results consistantly come back normal, this could possibly be an answer. Ask the rheumatologist.

All my best,
Miss G

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