View Full Version : New to this disease and confused about diagnosis

04-28-2012, 07:40 AM
Glad to be somewhere that other people may understand me !

I am 56 and a mother of 6 great kids. I was diagnosed with discoid lupus a year ago by a dermatologist due to lesions on my scalp. Rheumy did lots of labs and says I don't have SLE. I question that because I have sore joints,muscles,am tired,and have arthritis in my neck,wrist and ankle. I take plaquenil . My doctor says that the lupus I have won't cause sore muscles and joints ? He offered me depression meds ? I refused because I don't like the fact that he thinks it's in my head !

Has anyone with discoid lupus had these symptoms ?

04-28-2012, 01:09 PM
Theres a lot of autoimmune diseases that cause that and thankfully they are all treated with the same medication and are hard to diagnose properly. Really I don't know a lot about discoid lupus but this site is great with understanding about these kind of situations even if it might not be lupus. The problem about these kinds of diseases that it's hard for people even doctors to see it, diagnose it, and believe it. Feel free to keep venting on this site we all understand the frustration. I really hope you start feeling better soon!

running girl
04-28-2012, 02:53 PM
Welcome Lorik.

These AI diseases are very confusing and the doctors don't always get it right. Just keep at it and hopefully you will get the treatment you need. I am pretty sure there are some people on here that are taking a type of antidepressant that actually works for the pain. My hubby takes cymbalta for renal pain and it really works.
Hopefully some of the others can chime in a give you some help.

Anyway, I'm glad you joined. I hope you find the information you need,.


04-29-2012, 11:43 PM
hello lorik and welcome whl family i am sorry you are having such bad time with doctors we all have had doctors at one time or another tell us it is in our head. since there is no specific test for lupus they rely on a number of symptoms and sometimes it is hard to get diagnoses some of our members are still waiting for diagnoses. please think about keeping a diary of your symptoms and any questions you have for doctors it usually helps to go in prepared . i have sle and i understand how you feel they put me on anti deppressants at first telling me it was all in my head . but i knew it was not and demanded more tests. only you know your own body. goodluck and feel welcome to look at our different posts, hugs kim

04-30-2012, 03:10 AM
hi lorik,
you will find many of us take depression medication.....
it is not because we are depressed,
but because our brain does not work as normal.
we need the medication to assist us to think and feel normal.

please read a few of the older threads,
they are our personal story of life with lupus.

04-30-2012, 05:59 AM
Lorik, you might want to talk to your doctor about SCLE as well. Many don't know about it but it is kind of like a bridge between discoid and SLE. SCLE can have many of the same effects of SLE but there is no organ involvement. You do get the joint pain etc but no chance of kidney failure and such.

Another thing you might want to have him check for is fibromyalgia. Often times, the fibro gives me more problems than the Luis itself

04-30-2012, 01:41 PM
Hi Lorik,
I'm 54 and I have five grown children. The fourth grandbaby is on the way!
I've also had scalp sores since I was a teen, but no doc ever addressed that until I found a great rheumy. She checked me over from head to toe and found some of those scalp sores. Her diagnosis was that I have Mixed Connective Tissue Disease - an overlap of Lupus, Sjogren's, RA and Psoriatic Arthritis.
It's very common to have overlapping AI diseases - they run in packs.
Keep searching for the right answers. Many of us have seen several rheumys, and gotten different answers from each one.