Discussions By Condition: Medical Errors

Talk about misdiagnosis!

Posted In: Medical Errors 2 Replies
  • Posted By: Anonymous
  • February 16, 2009
  • 04:19 AM

I hardly know where to start. In the summer of 1986, I developed conjunctivitis. Within a few days I started losing weight, and had pain in my knees. I go to an Internist. He clears up the eyes, but is puzzled by the weight loss and joint pain.

After several visits, he decides to check my prostate. He calls to tell me I have inflamation in my prostate. That fact, combined with weight loss, and joint pain, he tells me I have Rieters syndrome.

He gives me medication for the prostrate, and naisd's for the joint pain.
I slowly gain the weight back, but the joint pain persists for several years. I go thru periods of feeling well, followed by weeks of fatigue, joint pain, and now muscle pain.

The joint pain starts to move from knees, to shoulders, elbows, and eventually to my lower back.

The fatigue and joint pain continue thru the years, and starts to really wear on me. I start having abdominal pain. The gastro doc decides to do a colonoscopy. They find ulcers in my colon, and inflamation in my rectum.

Now I've always been told there are two types of colon inflamation; Chrons and Ulcerative Colitis. But they can't decide on mine!
They give me prednisone, and sulfasalazine. The symptoms clear up.

A short time later, my symptoms flare up, but nothing shows up on the colonoscopy! However, inflamation is evident on the microscopic level. They seem somewhat shocked, but proceed with the prenisone, and sulfa drug again.

After suffering a few more years of flare ups and remissions, I start seeking help, as I start having extreme fatigue, arthralgias, and myalgias. My internist has retired, and gastro doc passes on.

So, my venture begins, to find a doctor that can help me. My bloodwork is mostly normal, and the docs are perplexed. From 2004, thru 2007, I saw countless docs in all specialty's (with one exception; neurologist) In fact, at one appointment, I was lectured by a Rheumatologist, about how pain is in my head. I didn't disagree with him, but he was waaay off base!

In early 2008, I found myself in the emergency room. The expected battery of tests, but now enter a neurologist. He ends up doing sleep studies, and finds apnea, and narcolepsy!

SO, to sum it all up, I now have narcolepsy, apnea, facet and degenerative disk disease, along with 3 bad disks, along with the other arthralgias, and myalgias, and neuropathy.

22 years of suffering and many too many doctor visits, with all the tests, the only confirmed diagnosis I have is the narcolepsy, and apnea! The autoimmune disorders have yet to have a true diagnosis. Lately my mouth and nose are dry, and I have tongue ulcers. I'll see my rheumatologist this week, and I'm quite sure that I'll be told I have sjogrens syndrome.

THEN, we'll get to work on finding out if its primary, or secondary! It just appears to never end!

I know this post is long, but believe it or not, I've left quite a bit out! Yikes!
Comments welcome.......

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2 Replies:

  • my first thought was knees are reactive arthritis from bowel disease with malabsorption.it has to be crohns, because absorption is in the small intestine and UC isn't. unless you didn't eat at the time because of total lack of appetite or stomach pain. if you ate and it came out the other end, i'd suspect crohns. hard to treat that one since its all the way through GI tract.
    Anonymous 42,789 Replies
    • February 19, 2009
    • 05:21 AM
    • 0
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  • I can very much relate..I've been diagnosed with one disease by one specialist then undiagnosed by another specialist, seems most just want to prove something between themselves and patient care goes out the window. :( Keep searching until you feel they've got it right.xxx http://www.undiagnosedillness.org
    Anonymous 42,789 Replies
    • February 23, 2009
    • 07:04 AM
    • 0
    Flag this Response
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