It's been 10 years...

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New Member

Date Joined Oct 2015
Total Posts : 2
   Posted 10/9/2015 1:54 PM (GMT -6)   
Hi, everyone,

I haven't been here in about 10 years, but I used to post here because I was having a lot of health issues, and my ANA was positive. I didn't have any joint swelling or pain, nor a butterfly rash, but this was the most useful and helpful forum with loads of kind people trying to help me figure it out. I was diagnosed with a myriad of things later on, but I am back here again, wondering what the connection is. I didn't have health insurance for the longest time (too many pre-existing conditions... blah... but now I have Obamacare... wahooooo) and was unable to address a lot of stuff. But, things have changed as I've gotten older (31 now). I still don't have a butterfly rash, although I get rashes on my face, chest, arms constantly... but what happens to my face is more of hyperpigmenting, mixed with vitiligo, right off my nose at the areas of my cheeks. My endocrinologist thought it might be Addison's, but as it turns out, my cortisol levels are insanely high (despite being underweight). I now have been diagnosed with hypothyroidism, hypoglycemia, POTS, PCOS, endometriosis... I have had two miscarriages (ouch...), hospitalized 22 times in the last 3 years (4 of those were for miscarriages)... my liver is on-again-off-again inflamed, my entire neurological system is so out of whack (I have been used for clinical trials at Vanderbilt)... I have mitral valve prolapse, plus an artery thickening of the walls that they still can't answer as to why... I am now on an inhaler because my lungs have deteriorated (I have weird growths there now, too, that they are monitoring)... basically, every system in my body is affected. Now, at 31, things are coming in flares... I go three weeks feeling fine (or, as good as could be expected), then I crash, HARD, for a week, so weak that I can't get up to shower, and my poor boyfriend has to pour water down my throat. My knees start to get stiff, and I can't even walk on my left one at all. My endo and my neurologist both are suspecting lupus now, but I am missing the red rash and other joint problems. But now, all organs are affected... liver, kidneys, heart, lungs, my entire autonomic system... I can't exercise (my O2 drops significantly... plus that knee stiffness/pain)... I have been dealing with health issues and fatigue since I was 8, and no one was ever able to identify what was really wrong. Now, I have to see a rheumatologist, and while that's possibly good, the last time I saw one (I wrote a post a decade ago here.. I really wish I could remember my login info), he essentially laughed at me and told me I was too young to have these problems, and even if I did, he wouldn't put me on any steroid since I was so young. I am not so young anymore, and the things that are happening now... it has been debilitating. I had to start working from home, and even that has been a challenge... every 3 weeks or so, I get really paranoid, because I know another flare is coming. I just can't keep on going without knowing, but with every system affected, and my ANA sky-high... without the usual rash or joint swelling/pain except in my knees... I am only 31 and already on 8 medications. I am getting a referral, but, is it possible to have every system affected, a positive ANA, but not the typical rash or joint stuff? I've been to the Mayo, to Vanderbilt, and no one can seem to find a connection. They address each issue as they show up, but... there HAS to be a connection.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 10/9/2015 3:06 PM (GMT -6)   
Lupus does NOT require you to have a rash or joint symptoms.

Although I am puzzled that the prestigious medical places you have been have not already explored the idea of an auto-immune disease.

Here is a website that talks about the 11 main symptoms of Lupus -- generally people are diagnosed when they have 4 or more of these symptoms.,,20468402,00.html

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 10/10/2015 7:11:17 AM (GMT-6)

New Member

Date Joined Oct 2015
Total Posts : 2
   Posted 10/10/2015 7:47 AM (GMT -6)   
I appreciate your response more than you could know. I just got some test results back (strange, at this time, but I am set up on an internet-based test, and they sent them out at odd times). Now my lung problem is worse than it appeared... I knew that intially, I had two lesions. I still do, but one seems to be fine, but the other... is at 7mm growth, and I am needing a biopsy. Absolutely every one of my organs, and now my lungs are apparently the worst. I don't even smoke, nor have I ever. I just don't understand. I am so distressed... I keep finding something else happened with my body, and then another, another... it keeps happening... now my lungs. I don't even know how to tell my boyfriend... he is staying out of town tonight, and won't be back until noon'ish... he has dealt with SO MUCH these last 5 years (our anniversary is in 9 days)... all he does is take care of me. This new news is such another blow... I am so sorry to all of you for having to tell your significant others, I really now feel your pain.
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