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An_254710 posted:
My Rheumatologist stated that I had "lupus-like"symptoms. This was after years of positive ANAs (1:640, and 2 that read 1:320) I also had another positive test which resulted in a speckled-pattern (another indicator of SLE). Only after I confronted her with what I understood the lab results to mean (based on my own independent research) did she come up with that lame "diagnosis" and prescribe Plaquenil. I am at a loss as to why she would not want to properly diagnose me unless it is a compensation issue due to the fact the first ANA result was discovered while I was still on active duty and it was not properly followed up due to them already processing me through a medical board or what. Everything I read tells me that it is important for my doctors to take my symptoms and care seriously but I have been fighting a losing battle since 2007. I am currently rated 90% disabled by the VA and cannot afford to pay for other insurance so that I can get a second opinion. I am in varying degrees of pain daily, have chest spasms too often, have a daily headache, am exhausted, and feel like I am at the end of my rope. Sometimes it is a struggle to just get out of bed. Oh and by the way, Thallesemia trait leaves me anemic (VA doctors cannot treat as iron supplements are not effective). Can anyone give me some glimmer of hope here please?
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lupycakes responded:
Hi, Sorry you are feeling so crappy.

Before you fire your rheumy, please note that just because you have a positive ANA does not mean you have lupus. There are over 100 autoimmune diseases that can cause positive ANAs with RA being the most common autoimmune disease. Not too mention there are perfectly healthy people who sometimes test positive. Unfortunately, there is no single test to confirm or deny a dx of lupus, which is why it can be hard to diagnosis.

Please understand that symptoms like joint pain and fatigue can be caused by several diseases - not just lupus. Lupus is dx by using a set of 11 criteria - if you have four of the criteria, you are believed to have lupus.

My suggestion would be to print off the list and circle the ones you believe you meet and take the list in to discuss it with your rheumy.

Over the years, I have noticed that rheumy's - compared to their other peers - are reluctant to dx ...they seem to see everything as shades of grey.

As a person who took years to get a dx of lupus, I know how frustrating that can be. Also note, it can take 6 months to see the full effect of plaquenil. So keep taking it. I hope you get answers soon and more importantly relief from all your symptoms. Hang in there!

Lupycakes


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