I have been feeling very sick for months. Getting worse every day.
Yesterday, my primary doctor said I probably have lupus based on my lab results and symptoms.
ANA titer= 1:80
Anti DNA Native dble strand= value 1
Rheumatoid factor= <10
B12 level= 132 (pernicious anemia)
Mitochondria M2 ab, IgG= 0.25
Protein in urine (not sure what level)
White Blood Cell Count: 3.7 (normal is 4.0-10.5)
-Feeling fatigued and generally unwell for months
-Swollen, tingly hands and feet
-Sometimes veins will get very large and feet with get very swollen and hot
-Hair loss...just coming out everywhere. Very thin and wiry around front. Not "patchy".
-Rash: sometimes small red dots on legs, arms, chest
-Rash: sometimes redness across nose and cheeks
-Rash: sometimes a "fish-net/mottled" reddish purple on legs and arms
-CONSTANT burping and reflux
-Sores in mouth and on tongue
-Memory loss, confusion, mixing up my words
-Full feeling. No appetite. Sometimes will regurgitate food after eating.
-Weight loss (115 lbs to 93 lbs in 3 months)
-After taking Bactrim: severe rash (all 3). Very swollen ribcage, especially bottom left rib. Sharp stinging/stabbing pains from left rib all across to the left back. Peripheral neuropathy. Tight chest and shortness of breath.
-2 days ago; after long+unprotected sun exposure; reaction similar to one above. VERY severe rash (all 3). General swelling, especially of ribcage and bottom left rib area. Same sharp stinging pains along ribcage and back. Swelling has gone down with Motrin, but some stinging still. Shortness of breath. Burping.
SO...My primary doctor thought it was lupus. She did an EKG and heart rate looked ok, but she wanted x-rays and things for my heart, lungs, and kidneys IMMEDIATELY to check for damage. She also said I needed to get on something to control my immune system immediately, so off I go to the referred rheumatologist.
The Rheumatologist says the labs indicate it is NOT lupus. He says it all looks good. WHAT?
He said my ANA was borderline (1:80), but the lupus test (anti dsna) was negative? ok. Then why did my primary say otherwise? I looked online and several sources say that HALF of people with Lupus will have a negative anti dsna. Wouldn't he know that?
He thinks it's a combination of things, and suggested I take lyrica because it might be fibromyalgia. Fibro doesn't cause rash like that! Or, like, a billion of the other symptoms I have.
He won't put me on anything else. He didn't do x-rays or ultrasounds. He is running some other autoimmune tests.
I'm so frustrated right now. I'm going back to him in 2 weeks for follow-up, but I'm terrified that if it IS lupus, I'll have another flare and this one might be my last. It makes me bed ridden for days. I'm terrified. I'm in pain. I want answers, and I finally thought I had a name for what was hurting me so much, just to have it taken away from me.
Can someone please tell me what to do? Does this seem like lupus? I am losing hope and the ability to even care.
Post Edited (Queen_Ghost) : 4/30/2014 2:23:31 PM (GMT-6)