New Test Results - Awaiting Diagnosis, Wanting Opinions!

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ChristieAnne
New Member


Date Joined May 2011
Total Posts : 1
   Posted 5/30/2011 7:37 PM (GMT -6)   
Hi everyone! My name's Christie and I'm just looking for some answers. I've been feeling bad on and off for years but lately it's been so bad I can barely get out of bed or eat anything. I've lost 30 lbs in 2 months and am still losing about 1/2 lb a day. I'm 21 years old 5'4" and originally weighed 165. In a way it's a good thing I've lost the weight but it's not good the way it's happened because I literally go days without eating anything sometimes and when I do eat it's only saltines, graham crackers, and canned chicken. This is everything I've ever been diagnosed with and what they've found recently.
 
I have had my gallbladder and appendix out because of the stomach pain, even though my tests were normal. I had an endoscopy which found that I had gastroperesis and gastritis which they said would not cause the pain I'm having. They also found that I have pleuricy. My SED rate has been high in every test and I have been spilling protein in my urine on and off. My liver enzymes have been high lately as well. Also I spilled ketones in my urine a couple times but I'm not diabetic. I still have bad stomach pain, my back and joints hurt really bad, my hair is falling out, I have migraines(which I've always had), I have sores on my head, rashes, blurry vision sometimes, numbness and tingling in my hands, and I'm really tired all the time.
 
In 2007 they diagnosed me with fibromyalgia and chronic fatigue syndrome, I was never tested for autoimmune diseases though. 2006 I was diagnosed with TMJ and osteoarthritis in my jaw. 2008 Hypothyroid, which seems to be fine now. 2007 3" ovarian cysts. 2007 diagnosed with hypoglycemia which hasn't really effected me this year.
 
I just got my test results back and my ANA is positive, Anti-SS-A is positive, Scl-70 is positive, and my SED rate is high. The same day I had a urine analysis and was spilling protein in my urine again. My liver enzymes were better this time though but still a little high. My next appt isn't for another month and my rheumatologist is not very knowlegable or nice for that matter so I'm turning to the internet for support. He didn't tell me what he was looking for with the autoimmune tests so I'm left to wonder what's wrong til then. I haven't had much luck with doctors.. They always make me feel bad about myself for some reason. I would love to hear what anyone thinks my test results could mean! I did a little research myself online but there's so much information and it's a little scary. Sorry this post is extremely long! Any thoughts, opinions, or comments are greatly appreciated!! :) 

Dodd
Regular Member


Date Joined May 2011
Total Posts : 34
   Posted 5/30/2011 9:28 PM (GMT -6)   
Well I'm no expect on lupus yet but it certainly sounds like it or some other weird autoimmune disease. As we all know by now, lupus can effect any organ or system, I see no reason why it can't cause your gastroparesis. Now gastroparesis IS something I know about. I was diagnosed with that about 4 years ago after having my gallbladder out and I kept getting sicker and sicker. It was quite agonizing and I lost 50 lbs in 3 months. Now you have a lot of other stuff going on and my gastroparesis was idiopathic but I was blessed in that I have responded very well to domperidone. With gp you really only have 3 drug choices; Reglan, domperidone, or erythmocycin. I tried Reglan and not only did it not work but I had side effects. Domp literally saved my life (I take 4 pills a day religiously), and I never tried erythromycin. Domp is hard to get in the US but I have little trouble getting it online. It is not approved by the FDA because it causes a lot of women to get breast milk. Are they treating your gp? As far as your Rhuemy goes, find a new one. This person is going to be the one helping you get better so you need one you believe in and trust.
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