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Adam DoubleYoo
Regular Member

Date Joined Apr 2011
Total Posts : 65
   Posted 5/13/2011 9:47 PM (GMT -6)   
I was recently put under all kinds of tests for 2 months for Gastrointestinal problems, and my GI doctor has told me I have Crohn's disease. but he is curious about it because the Crohn's disease he sees shouldn't be as debilitating as it is, so he suggested I see a rheumatologist, not only to help manage systemic crohn's symptoms, but he wants me to undergo testing for Lupus.

I have an appointment on May 26th to see a rheumatologist, and I'm nervous...what kind of tests do they do? I've done some research on it...but I'm just curious about how Lupus presented itself to you all if you don't mind, I'm just very scared.

When I first started getting sick, my stomach was in pain all the time, my heart was beating fast all the time, I was getting fevers (and still getting them) from 99-100.5, sometimes even 101. I have headaches every day, sometimes just very small ones, and sometimes they are horrible migraines. I have no energy, and didn't in the beginning. My face will be red all the time, and sometimes it burns. My vision has gotten worse over the past 5 months, and it hurts my head to look at things sometimes on some days.

I was getting panic attacks all the time, my heart would be pounding all the time sometimes horribly fast to the point where I called an ambulance one time. My EKG's always came back normal, so I've been on Klonopin that I take 3 times a day every day. I take Pentasa for my GI inflamation. I literally take tylenol at least once a day when I notice a fever, I take my temperature every day.

I get so scared all the time, sometimes I feel like I'm going to die and it's going to be my last day. It scares me so bad that sometimes I don't sleep.

Did anyone have similar experiences before getting diagnosed with Lupus? I understand it's different for everyone, and that there's more than one kind of Lupus, but sometimes you can have more than one kind of Lupus.

Thank you.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/14/2011 9:06 AM (GMT -6)   
My first visit, which was a few weeks ago, to the Rhumy was a lot of questions and a lot of bloodwork. I'm waiting for the bloodwork results right now.
My symptoms come and go right now:
tender feet, tender hands, sore elbows, swollen lymph nodes in my neck, odd temperture changes (96.8-103), back pain, knee pain, headaches, blurred vision, red face and chest (sometimes itches), extreme fatigue, shaking of random muscles
Sometimes these are one at the time, sometimes all at once...(sigh)

Adam DoubleYoo
Regular Member

Date Joined Apr 2011
Total Posts : 65
   Posted 5/15/2011 2:07 PM (GMT -6)   
Those sound exactly like all the symptoms I started with and still have.

Adam DoubleYoo
Regular Member

Date Joined Apr 2011
Total Posts : 65
   Posted 5/15/2011 2:50 PM (GMT -6)   
yeah my symptoms just appeared out of nowhere and it was horrible. After the stomach pain I started getting headaches, and my body would twitch and i was exhausted and i kept feeling like i had been hit by a bus all the time. then i started getting heart palps and panic attacks.

New Member

Date Joined May 2011
Total Posts : 14
   Posted 5/16/2011 8:34 PM (GMT -6)   
I haven't seen the rheumy yet but I have a lot of technical symptoms (bloodwork, MRI) that go along with mixed connective tissue disease. I also have aches n pains (especially in my neck and back) along with excruciating migraines.

Oddly enough, emotionally I've never been better. My cognitive functioning isn't all that stellar. I'm a spacey idiot haha but my emotional health is good.
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