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Please tell me how your lupus was diagnosed?


Forum: Autoimmune Diseases and Disorders

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  #1  
February 15th, 2010, 05:35 PM
Celena's Avatar Proud JM hostess
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Please tell me how your lupus was diagnosed!?!?

I was thrown into the "fibromyalgia" diagnosis quickly after a sudden severe onset of symptoms... I've been dealing with the severe symptoms for 2.5-3yr while I've had low grade fever right around 100, hair loss and many other things I won't go into years before.

No fibro meds have ever worked on me, I've been on at least 50 different meds and 100+ different combos / strengths.

I'm curious how they finally diagnosed you with lupus... I've had a ton of blood work, some of which that was so ever slightly low/elevated but not enough for rheum to do anything about, but enough for the labs to highlight!


Thanks ladies!!!
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  #2  
February 16th, 2010, 06:43 AM
Sacred Silence's Avatar Mega Super Mommy
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UGH.. mine has never been OFFICIALLY called Lupus.. my rheumy takes my blood every 6-8 weeks and although there are some indicators for lupus, there aren't enough.. but I have a ton of the symptoms.. sigh. She said that she's hesitant to put Lupus on my chart in case I ever decide to move onto another rheumy because once the Lupus label is given to you, it opens up doors for some really nasty meds. She also said that I'm the patient that you KNOW has lupus but that science can't prove yet.

The symptoms that I have on a recurring basis are:
mouth and nose ulcers
joint pain
shingles! ugh.
fatigue
memory/cognitive impairment
weight loss
hair loss
sun sensitivity (but not in rash form, it causes me to nearly pass out or become extremely dizzy and fatigued)
fevers
pleurisy
and a whole host of other problems that I am too foggy brained to list.

I think the key to being treated effectively is to find a doctor who is a good match for you. Took me four tries. But my doctor now is wonderful. Good luck to you.
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  #3  
February 16th, 2010, 08:00 AM
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Thank you Terri

I take back the "ton" of blood work... they've run a few basic tests several times. I've been thru a few doc's and I'm just trying to get to the bottom of this since no "fm" meds do anything for my symptoms. It's frustrating.
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  #4  
February 16th, 2010, 08:12 AM
Sacred Silence's Avatar Mega Super Mommy
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Celena, my advice is to find a new doctor. When they finally found my + ANA and my elevated sed rate, it was when they ran a complete work up for autoimmune issues and for Lyme Disease, and thyroid issues... and the list goes on. I think the most blood I've ever had drawn at one time was 16. Find someone who will take you seriously and run the tests you need. You have to be your own advocate with your doctors and health care providers.
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  #5  
February 18th, 2010, 05:18 PM
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Hi there, I only have the sore joints and the markers in my blood. My joints were so swollen and sore that I couldn't bend my fingers and needed help getting up and getting dressed. My family Dr. tried all different anti-inflammatories and I finally said that I need to see someone else. He sent me to a rheumatologist who was testing me for rheumotoid arthritis or lupus. He put me on a lupus medication and said that if I didn't have any improvements than I had RA. I did so he gave me a probable diagnosis of Lupus. I was sent to another rheumatologist who specializes in lupus who offically diagnosed me with mild lupus as well as fibromyalgia. I've never had a flare up or had any other symptoms. Hope all is well with you!!
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  #6  
February 22nd, 2010, 05:58 PM
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Thank you both so much for your experiences, I have to sit down here for an hour to tell you everything I've been thru and what dr's n meds... I've done a decent amount of my own research and it just doesn't add up.

I'm so glad to have found this place! Thank you ladies so much!!!
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