Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello all.. I have a family history of lupus and after my son was born my body revolted big time...ended up in the hospital with all sorts of problems (couldn't breathe, muscle weakness, numbness tingling etc etc.).. result is I'm a mystery..
My ANA is always positive (up to 1:640, or 860 at the highest- always speckeld and soemthing else),,.. I am on IVIG every 3 weeks and plaquenil - my heart, lungs, muscles, nerves, eyes, intestines... basically everything is involved
Does anyone else have muscle atrophy? Mine is diffuse.. shoulders, buttocks and a little bit on my hands.. .. my weakness comes and goes - but can be pretty bad..
I have an itchy red rash on my shoulders, chest and sometimes around my eyes.. (my ESR, CRP and CK are always negative). at times I feel like I am going to drop dead... i feel soooo awful!!! I'm taling to them about a muscle biopsy, or skin biopsy of this rash to get other answers
my lupus panel is always negative though... I'm so tired of being a mystery! Any thoughts??
My ANA is always positive (up to 1:640, or 860 at the highest- always speckeld and soemthing else),,.. I am on IVIG every 3 weeks and plaquenil - my heart, lungs, muscles, nerves, eyes, intestines... basically everything is involved
Does anyone else have muscle atrophy? Mine is diffuse.. shoulders, buttocks and a little bit on my hands.. .. my weakness comes and goes - but can be pretty bad..
I have an itchy red rash on my shoulders, chest and sometimes around my eyes.. (my ESR, CRP and CK are always negative). at times I feel like I am going to drop dead... i feel soooo awful!!! I'm taling to them about a muscle biopsy, or skin biopsy of this rash to get other answers
my lupus panel is always negative though... I'm so tired of being a mystery! Any thoughts??
But lately I'm developing a larger waistline while my body weight stays exactly the same. Have to be losing something, and I think it's muscle mass...maybe bone density too. I'm on the low end of the BMI, so cutting back on calories seems like a bad idea. At this point I can't think of anything to do about it. If I exercise more, I just get sick.
The statement about having a negative ANA panel reminded me of a cartoon I saw once. A doctor is at the foot of a patient's hospital bed looking at the patient's chart. The patient has a sheet over his face.
The doctor says..."I just don't understand this, the blood work looks fine. He shouldn't be dead like this."
http://www.thelupussite.com/fact7.html
I am going to claw my skin off on my shoulders and chest.. i have blisters (very tiny) on the tops of my hands (have had these on and off sinc this all started).. I also noticed my neck skin (in front) feels like sandpaper, like the rest of my rash, but it's thick.. hurts to look up since it causes stretching of my skin..
MY mouth also cracks and won't open all the way due to skin tightness on the sides...
I have a rheumy apt tomorrow- with someone new, as mine switched offices and is impossible to get in (i'm an established patient, and it will be mid october before she can see me)! I"m praying that this new guy may find an answer....
All my muscles have been affected, but my legs and arms feel the weakest. As for joints, I describe it as feeling like I'm coming "unglued." My wrists, fingers, shoulders, knees, feet--all have issues. Eating a gluten-free diet and eliminating artificial sweeteners and most refined sugar have helped noticeably, but not completely. My doctor feels there might be something more, so she is having me tested for heavy metals, especially mercury. This was a result of recent dental issues that triggered a flare. We are currently awaiting the results. When I did research about mercury and autoimmune disease, I was amazed at how much is out there, and how many of my symptoms are also symptoms of mercury overload. Here is one website on the subject.
http://drhyman.com/blog/2010/04/20/autoimmune-disease-stop-your-body-from-attacking-itself/#close