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Q: Possible Sle?
asked by: angieg1974 on May 19th, 2004
New User
I am a 29 year old female experiencing more symptoms than I have time to post right now. Mad blood work on two seperate occasions came back positive for ana with the titer both time at 1:640. I also showed deficient complement levels. My primary doc suspected lupus and referred me to a rheumatologist who was very dismissive with me. I have many of the symptoms of sle according to the information I have, but the doctor said that because I had no current joint swelling, no prior heart infections and no current rash on my face that it could not be lupus. I have, however, had a seizure in the past 2 months, have recurring hand and wrist pain, numbness up the lengths of my arms at night, recurrent low grade fevers and iron deficiency anemia with a serum ferritin level of 4. I am soooo confused because my primary care doc was certain of lupus, but the specialist ruled it out. So what the heck is going on then? Who do I need to see to get some relief now? The most troublemsome aspect of what is going on is that I feel like my iq has dropped 40 points and I can barely remeber my name sometimes. I had an mri that came back clear as well as a spinal tap and eeg, all normal. I am scheduled for an emg later this month, but how is that going to help if they can't tell me why I have nerve damage??? The doctors I am seeing seem clueless. I feel clueless. This has to stop......Any insight is welcome..........
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LadyBrannon
replied on May 19th, 2004
Active User, very eHealthy
Welcome, angieg1974!

Lupus is a difficult disease to accurately diagnose. It can take a long time...And may take more than one doctor. It also may not be lupus. There are many autoimmune diseases out there that mimic lupus, but are not lupus.

It took me 7 years to be diagnosed. I had symptoms before, during and currently.

There are some things you can do to help the process along.

1) keep a very detailed diary.

2) keep a copy of all your labs and doctor visits. If you live in the us, you have the right to your records...

3) get a second opinion from a specialist. That, too, is your right.

4) when you next go to the doctor (gp and/or specialist) have 10 questions ready for them. Don't leave until they are answered.

This is just the tip of the iceberg, but I do hope it helps.

Hugs,
ladybrannon
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