I'm not. The Rheumatologist I saw ran everything he could think of and all the were negative. (He ran all antibodies on top of the usual ANA, etc. because I have had shingles a couple times.) He said they were so negative that it couldn't be anything autoimmune, and that it was highly unlikely that it was lupus, but not impossible. He basically left it as I don't need to see him unless I am having problems, which I have been mostly in a remission-ish state. Which is good, but doesn't give me any answers. He did say to see a neurologist, and my neurologist says I only have migraines. I have an appt in April with another neurologist for a second opinion.View Thread
Well that is good to know. I guess I am just getting frustrated. I feel lousy and no one can tell me why. Every time someone tells me my labs are normal I want to cry. I have the symptoms, but without the obvious butterfly rash or positive lab work I can't get a diagnosis. I am to the point that I am Ok with being sick, I just want to know what it is.View Thread
Ok so I am still undiagnosed, but I have a question. I know DHEA is helpful in reducing Lupus symptoms. But if someone has a naturally occurring slightly elevated DHEA wouldn't that interfere with Lupus diagnosis?? If it reduces the symptoms, wouldn't it also reduce the elevated levels of antibodies in the blood stream making diagnosis more difficult?View Thread
Thanks Lisa!! I am still going without a diagnosis but I keep trying to give the docs enough bread crumbs to figure it out. So it helps alot to be able to ask other people who have been dealing with this for a lot longer than I have. They have done a ton of lab work that all comes back negative. My newest pcp's theory is that I may have lupus but I may just not be far enough along yet to have positive lab results. I hope all has been well with you, TAKE CARE!! View Thread
Hey all, sorry I haven't written lately. Hope everyone has been trying to stay healthy. I have been going through doctors, again. I'm still trying to get diagnosed. I have a new one now and once the weather gets nice and I go sit in the sun a while they're gonna do a biopsy. Hopefully they'll find something.
Anyways, I have come down with shingles for a second time. The last time I had it was 4yrs ago. I am just curious as to the rest of your experiences as to whether or not shingles tends to be more prevalent in conjunction with lupus.View Thread
Hi! I was reading Jessi19661's responses and had an idea that may help during the day. For wrapping your hands at work, try Vetwrap. It is a type of horse tape that you can pick up at farm supply store, with the horse supplies. Its an nice compromise between a stiff tape or brace and an ace wrap. The bad thing is that you can't reuse it. Although it is cheap a roll is a couple dollars, it is self-adhesive, and can be cut to fit. This may work better for you as a Dental assistant, because of the frequent hand washing, you can't disinfect a brace easily, and ace bandages strech out or lose elasticity with washing. I usually use it like an ace wrap. Hope it helps!View Thread
Hey just figured I would drop in and give you guys an update. There are alot of really awesome people here and I really appreciate all the support whatever is wrong with me.
I was in the emergency room a week ago Sunday with a migraine. The gave me my usually and the migraine went away, but I had pain behind my ear. It stayed there for two days, and the went to the other side for a couple days and now its dull headache that won't go away completely. I had seen my PCP and she gave me more pain meds and REFERRED ME TO A NEUROLOGIST!!!! YEAAAA!!!!! OK, so its not a Rheumaologist but at least its a specialist. So keep your fingers crossed maybe they will find something.View Thread
Have you started any new meds recently or been taking more pain medication than usual? If you have tell your rheumy, if you haven't already it's really important. Medications can effect your liver function. Get some rest and hope you feel better soon.
So the lab work came back...they called and said that my Vitamin D was low but everything else was fine. I am getting a little frustrated. I just have that funny feeling that it more than that, ya know? If it was a low Vitamin D I would hurt all the time not just in the morning. I have had these off and on for about 5 years, even in the summer. And I don't have muscle weakness, it just seems like an easy answer. I'm just a bit distrustful of them because they don't want to tell me my lab values,and they tell me things are normal. But my UA is always abnormal(protein and casts), and the last one they did, all they said was that it is normal. Do they mean my normal or everyone else's normal? Why are they keeping my lab values from me, I know my numbers better than they do. I am going to notice if something is off. So I guess I will take the Vitamin D supplements and see what happens.View Thread
Thanks for the replies and the insight. I am waiting on an ANA, ESR, RF, Lyme Titer, and Vit D level. My NP wants to be thorough. I am having a combination of joint aches, muscle pain, migraines, photosensitivity, and my UA regularly has protein and casts. I had just been wondering if it would help in diagnosing one way or the other. I figured it couldn't hurt to ask.