Diagnosed w/lupus, then not, what to do?

Diagnosed w/lupus, then not, what to do?

Posted In: 1 Replies
  • Posted By: snickers2
  • July 31, 2007
  • 05:40 AM

I have quite a complicated medical history, but surely not so complicated that two doctors cannot come to the same diagnosis. I was diagnosed with Fibromyalgia 15 years ago. Yes, even before most doctors believed it was a chronic condition. But prior to that, around three years, I started having a horrible rash, primarily on my chest, back, and stomach, when I was in the sun enough to be slightly burned. It was a red, itchy rash that took about two days to appear, then the itch was maddening. It also took around 10 to 14 days to go away. At this time, my internist said that I obviously was allergic to the sun. Not long afterward, I was diagnosed with clinical depression. About four years after the diagnosis of Fibromyalgia, I started getting red splotches on one cheek. It didn't get better, but continued to grow from a small spot to my whole left cheek. Then it started on my right cheek. At that time, and I'm still not sure if it's not, I believed it to be sun damage.

Six years ago, I fell down a flight of concrete stairs at work and herniated two discs in my low back and one in my neck. I underwent surgery 18 months later on my back. Twenty months later, I had neck surgery. I have never recovered from that last surgery. Even though the neck surgery was much less invasive than the back surgery, I have yet to regain my stamina. My fatigue is so great that a trip to the grocery store can knock me down for days.

I realized something was terribly wrong when my achiness and fatigue was far and beyond my fibromyalgia. I had had it for twelve years and had never been in as much pain. I was diagnosed with arthritis in my right hip. A cortisone shot improved that pain, but months later I was still in horrible shape. My gums ached, I had swelling in my hands and feet and also around my eyes. My hair started falling out unlike anything I'd ever experienced. I started running a low-grade fever and had extreme night sweats due to that. Finally, I changed doctors.

My new doctor and I decided I might have Lupus. He ran the blood tests and my ANA was positive. Together with my symtoms, he felt that I did have Lupus. THose of you with lupus know how horrifying the thought is to think you have this disease. He prescribed Methatrexate. My symptoms got better, I especially quit running the low-grade temp. But after four months of this, I decided I needed the opinion of a rhematologist. My doctor happily refered me to one.

This doctor, this specialist, immediately said the rash on my face was not a butterfly rash, which I still don't understand since it looks like a butterfly. He said my fatigue and malaise was fibromyalgia and chronic fatigue syndrome. He did all the blood and urine work and everything turned out fine. Of course, I had been on methatrexate for four months. This didn't even occur to me until later, I was so ecstatic that I didn't have this dreaded disease.

Unfortunately, I continued to experience low-grade fever, terrible fatigue and flu-like symptoms. Then in May, I was scheduled for another back surgery. The pre-test for the surgery showed blood in my urine and low-grade fever. After five days of antibiotics I had surgery. Ten days later, my urine was once again tested. Again, blood in my urine. My neurosurgeon prescribed antibiotics again and said he thought I might have a chronic infection. After ten days of antibiotics, my symptoms were just as bad....low-grade fever, achiness, swollen face and gums.

I've now decided to change doctors again, but my frustration is limitless. If anyone can help with similiar problems, please let me know. We all know Lupus is extremely hard to diagnose, but is it this hard? Or, am I wrong, do I have something else?

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  • Have you asked your dr about possible kidney complications? Especially with the blood in your urine. My 13 yr old son has been dealing with recurrent fevers for 2 years now sometimes with no other symptoms. His fevers can last from 1 day to 2 wks! They recently found protein in his urine and are now looking at kidney complications, but of course NO DIAGNOSIS! Anyway...I have been researching lots of kidney disease symptoms and have found that itchy skin can also be a symptom. I would suggest looking into kidney (nethropapthy) symptoms. The kidney boards here have good info. My son does not have any urination pain, so I don't think that's always a symptom. Sometimes at the beginning you can have little or no symptoms. BEST OF LUCK!Do you mind telling me more about your fevers? How long have they been going on and what have your doctors said? We have been to countless drs and they are all puzzled by his recurring fevers.THANKS!:confused:
    knoxmom 15 Replies Flag this Response
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