Lupus misdiagnosis??

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New Member

Date Joined Aug 2014
Total Posts : 1
   Posted 8/5/2014 10:10 PM (GMT -6)   
It's frustrating when you hear from one doctor "you have Lupus" and another says " well your lab work is normal so.... Where do you turn to get a TRUE diagnosis. The pain is unbearable at times, the fatigue, depression.
Has anyone ever experienced any/all of this?

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 8/5/2014 10:35 PM (GMT -6)   
Hi there, I'm sorry you're having a tough time getting a diagnosis. I hate to say this to you but this is very common for most of us. Lupus is the disease of a 1,000 faces and it's very hard to pin down. It can look like so many other things.

There's is any one specific test to DX lupus. You must have 4 of the 11 symptoms listed at the the lupus foundation website to be DX'd with it and for the Dr. to start treatment.

It took 13 years before I finally was told yes I have it and they started my treatment. I suffered the whole time and can't say how many times I was told there wasn't anything wrong but I was depressed. I went thru I guess 6 different Rheumys before getting my DX.

I understand the pain and fatigue, boy do I ever. Some lupus patients have mild cases and never need medication. Others, like me, are severe and are on a bunch of medications. I'm so sick that I take 27 oral medications daily, two shots daily. That doesn't include pain medication or anti nausea medications, I've tried every treatment for lupus (except gold infusions) and I still am flaring 24/7 365 days a years. Nothing seems to help me at all. I also have RA, Fibro and learned last year I have T-cell LGL Leukemia in addition.

I know you're frustrated, I'd suggest you take a look at the list of symptoms, and then try to see a different Rheumy. I'd suggest you keep a journal of all your symptoms, your pain levels, how much fatigue you're having and on a scale of 1-10 where is it at. Take photos of all rashes that you may get, I mean write it all down for when you see the next Doctor.

Sometimes, this is all that will help them in making a DX. Until you get a Rheumy to DX your, but more importantly TREAT you, keep coming here and vent all you need to. We all understand where you're at and how you feel. We've all been thru it at some point. We have some folks who were DX'd on the first shot or fairly quickly, and others like me who it took forever.

Hang in there and know that we care and are here to offer support and answer any questions.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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