Hello everyone, I am new here, but I have used forums before as I am a Polyglandular Syndrome sufferer.
My most recent dx is ELS. What ever that is. I know it is lupus but my rhuemey in Toronto sort of left me hanging as far as a positive dx and absolulty left me hanging as far as my symptoms.
I have tested pos for anti-RA and anti-SM whatever that is but neg for the ANCA(?).
He told me exactly this when I went back for my results "I would like to tell you you have Lupus..but it's bigger than that....you have polyglandular syndrome. (He is also concerned about my liver I see him in Oct about that, I also have something elses he found about a problem with "thick blood"??)
So what do you think that means? I'm confused.. :roll: Do I have lupus or don't I?
It's not so bad when I'm feeling not to bad but latley I'm really having a time.
Full blown pain, my digestive tract is a mess so I don't want to eat, my sinuses are a mess which is causing all kinds of interesting affects...headache...face pian....poor sleep...night sweats...confusin/dizziness and boy the fatigue is miserable.
I have Addison's disease too, it's another autoimmune thing where the adrenal gland is Kaa-putt, so I take my strength and stamina by mouth in the form of steroids. But when there is another health problem there just isn't enough to go around. See pepole without addison's when under stress physically or otherwise their bodies just produce more adrenaline/steroid to compensate for the stressor.
I have no gp and my specialists are hours away. My hospital is completly useless. Even with the emergency card my specialist wrote for me to give to the triage nurse doesn't help. She's a nurse and most dr's don't even know what Addison's is. They don't know anything nor are they willing to listen. I have quit going there for help.
Any ideas appreciated.