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ahrhmh88
New Member


Date Joined Apr 2014
Total Posts : 6
   Posted 4/21/2014 7:22 PM (GMT -6)   
I am new to the forum but have questions. I have had random symptoms over the past three years that have sent my doctors looking at every autoimmune possible. A few months ago I had unwavering nausea and left upper quadrant pain (every test done and nothing showed up), livedo reticularis showed up on my back and has stayed. My neurologist sent me on to a rheumatologist finally. I told him my newest symptoms over the past months and my current issues of ankle pain and stiffness and right hand and wrist pain and stiffness. Extreme fatigue. He ran a full work up and all that showed up was low compliment 3 and low compliment 4 blood levels. My ANA was negative. He said that he was confident that it is one of two things, Lupus or Antiphospholipid Antibody syndrome (I have Preeclampsia and HELLP Syndrome with my one and only son). He said we were on a watch and wait. I am now experiencing low grade temps for almost two weeks and more joint pain and swelling and headaches ranging in severity daily. I am going back to see him Wednesday. I know there are guidelines for Lupus and I only fit 1-maybe 3 categories but the low C3 and low C4 are indicative of pretty much only Lupus. Help?!?!?!

Post Edited (ahrhmh88) : 4/21/2014 6:33:06 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/21/2014 8:11 PM (GMT -6)   
Lupus has a million faces so it's tough to diagnose so most doctors and us leave it to the experts (rheumys).
Try to be patient until Wednesday and find out what the doctor says.
Meanwhile you can do some simple things to see if it helps you feel better. Avoid sunlight as much as possible, because most of us are photsensitive. Heat and ice helps with the stiffness and swelling.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

ahrhmh88
New Member


Date Joined Apr 2014
Total Posts : 6
   Posted 4/21/2014 8:32 PM (GMT -6)   
Hi Joy. Thanks for getting back so quickly. My Rheumatologist was the one who said Lupus or Antiphospholipid Antibody Syndrome b/c of my low c3 & c4. The appt Wednesday is to discuss trial treatment. I guess my fear is how is he so certain of treatment when he could not get himself to lean more one way or the other only 2 weeks ago when he gave me the results. Is low c3 and low c4 with livedo and the other symptoms a dead-ringer without all the other criteria??

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/21/2014 9:05 PM (GMT -6)   
All I had was joint pain, swelling, positive ANA, rashes, and a high CRP.

After I started the plaquenil it helps me feel so much better. I still swell and hurt but nothing like it was at the beginning.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

ahrhmh88
New Member


Date Joined Apr 2014
Total Posts : 6
   Posted 4/21/2014 9:12 PM (GMT -6)   
All my blood shows is a Negative ANA but low c3 and low c4. I have no rash (except livedo). I have so many random things that have gone wrong and cause me trouble over 3 years. Just nervous sorry for all the posts.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/21/2014 9:13 PM (GMT -6)   
Diagnosing these auto-immune illnesses is quite tricky as the same disease will appear in 1000 different ways given 1000 different people.

Often how a patient responds to a specific course of treatment gives the Dr an immense amount of information that cannot be learned from tests. observations, or patient-reported symptoms. Don't despair! Treatment without firm diagnosis is very common and very necessary with auto-immune illnesses; not nearly as crazy as it sounds at first.

See the link below, diagnosing lupus, for the 11 symptoms, 4 of which are necessary for diagnosis. There is not one single definitive lupus test.

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

ahrhmh88
New Member


Date Joined Apr 2014
Total Posts : 6
   Posted 4/21/2014 9:17 PM (GMT -6)   
Thanks Lynnwood. That eases my mind that you can treat without definitive answers. I am not a big medicine person so it makes me feel I need a more definite answer to avoid taking something I might not need. I will go with open eyes and ears to my appt Wed and see what my Rhuemy has to say now. Thanks.
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