I went to a Rheumy and she said I was 4 out of 5 positive with Lupus. Positive ANA and sed rate of 76z lots of pain in my hands and joints and my hips are horrible. I have every symptom except for the face rash. I moved to California and saw Dr. Wallace and he said he’s doesnt think it Lupus cause its too borderline and maybe Fibro but to go see a hormone doc cause he thinks its lack or cortisol production. I go see the hormone doc with high hopes and before even seeing my tests results he says I’m depressed and making up the pain in my head. I told him I’m a bubbly person and not depressed and he laughed! He said my hormones are fine and there is nothing wrong with me and I need anti depressants and a shrink! WTH!?! He was a waist of $450! Now I have 1 yes for lupus, 1 no maybe borderline but doubts it, and 1 that thinks I’m depressed for some weird reason. I have real pain and I can’t work and I love to work. I just want to know what’s wrong so I can fix it or manage it and not be in so much pain. My cousin is a Naturopathy doctor and she put me on a detox and then will give me anti inflammatory supplements. She thinks its possible I have heavy metals (I have a mouth full of silver fillings) and she thinks something is causing my inflammation and cause the borderline Lupus. She says she thinks I’m borderline negative though. So far I feel a little better. I have more energy and I’m taking 1 pain killer instead of 4. But I’m still unable to work. How can I have all these Lupus symptoms but not have Lupus? How can no one know what is wrong with me. I know it’s not in my head. I have blood work showing a high sed rate. My joints in my fingers swelled one day and my mother saw how painful it was. How can I have no for sure cause and everyone is clueless??? I went to the top Rheumy doctor in California and he was clueless!
Also I read if you have old silver filling they can cause fake Lupus symptoms and when you take them out you feel normal again. Maybe it’s the metal?
I feel for you. I wish I could say something to make you feel better. Just don't give up. If you believe that you do have Lupus then find another Dr. Try to take it easy and don't get to overwhelmed. Stress can make you sick. I don't get a rash on my face either and I had blood work done and a skin biopsy and was told I have Lupus so the rash on the face not being there doesn't matter. My lumps and skin rash on my arms and legs is what made me go see the Dr. Just hang in there and research as much as you can.
You're not crazy. I went through the same thing except they were ALL rheumatologist. First one said, yes, something is wrong but couldn't figure out what. Refused to test for Lupus or Sjogren's, but finally stopped trying things after three months and wrote me off. Then in Oct of 2011, I saw 2nd rheumy, who I had seen about 7 years before and who diagnosed fibromyalgia but since my primary care could write the same scripts, I stopped seeing him. He said there was absolutely nothing wrong and he was even wrong about the previous dx. Finally in January of 2012, I saw my 3rd rheumy and she tested for everything under the sun. I came back positive for Lupus through ANA. The thing is, if your ANA is positive, YOU HAVE LUPUS! It doesn't matter if you don't have the rash. Everyone has different symptoms. No one is the same. Look for another rheumatologist. Contact your state's chapter of the Lupus Foundation. They can direct you to a physician and also give you more information about the different subtypes of Lupus, there are several. Hope this helps! BTW, the facial rash is NOT my most prevelant symptom, for me it's itching. All over. Drives me Crazy!!!!
Hey did you go to my rheum doc?? For the very first time in my life, the ANA came up positive. In Sept it did not show, in Nov it showed. Also tests showing that kidneys are flaring up again. Same dog gone thing: You might be in early stages, but here's a load of anti-depressants because you LOOK depressed, sleep deprived etc. I don't know why your hands are swelling and you have chronic pain. Tell you what, I will retest you in FIVE OR SIX years." Then he gave me a drug combo that was extremely dangerous and not to be mixed. He's just like all the others, take an anti-depressant and don't call me again. The one before, primary doc said not to go back after I asked her why my hands swell and tongue pain is keeping me up at night.
I think lupus is confusing and hard to nail down. I do also believe in metal poisonings too.
Their answer is always depression when they do not know what is wrong. I get so mad at doctors when they say it is all in your head. Go home and pray about it God will heal you. Yeah that one got the doctor I was seeing a piece of my mind even if I did not have any to spare. When he told me that I looked at him and told him "Wow I must be worse off than I thought because I sure thought that I came to see a doctor and not a preacher. Wow is this church? Who are you to tell me that I am crazy?" This with other words that I cannot put on here. lol I have asked doctors if they were psychologists before and other things. I have a great doctor and I really love him. He is the first one in about 20 doctors that found the Lupus and has worked to keep me going. I do know that other things like stress, pain, husbands, some fabric dyes, some foods like pork, and many other things determine how I am going to feel today. I about died in 2011 because of the stress caused by a stepdaughter and I refuse to allow that kind of stress into my home or my life again. I do relaxation exercises every day and yoga when I can. I take my pain medicines at bed time and sometimes during the day if needed and I do the things I enjoy doing like quilting. We only get one life here and regardless of what the stupid doctors tell us we do have more control than we think we do. It is easy to get caught up in the mix of what everyone else thinks but if we stop and take control of our happiness and our lives in any way we can then we are going to feel better.
I have been reading about the systemic effects of mold exposure and lyme disease - you might what to check that out - my naturopath is finding it in many patients with similar symptoms. You don't feel well, I get it, but it many be something other than lupus.
There are not only State chapters for LFA, but City Chapters too. Those members may be able to direct you to a doc in your area who is knowledgeable and has a bedside manner! Perhaps he/she can get you a final answer - some docs will work until they figure it out OR they will tell you what it isn't and you can trust their word.
Amy said:
You're not crazy. I went through the same thing except they were ALL rheumatologist. First one said, yes, something is wrong but couldn't figure out what. Refused to test for Lupus or Sjogren's, but finally stopped trying things after three months and wrote me off. Then in Oct of 2011, I saw 2nd rheumy, who I had seen about 7 years before and who diagnosed fibromyalgia but since my primary care could write the same scripts, I stopped seeing him. He said there was absolutely nothing wrong and he was even wrong about the previous dx. Finally in January of 2012, I saw my 3rd rheumy and she tested for everything under the sun. I came back positive for Lupus through ANA. The thing is, if your ANA is positive, YOU HAVE LUPUS! It doesn't matter if you don't have the rash. Everyone has different symptoms. No one is the same. Look for another rheumatologist. Contact your state's chapter of the Lupus Foundation. They can direct you to a physician and also give you more information about the different subtypes of Lupus, there are several. Hope this helps! BTW, the facial rash is NOT my most prevelant symptom, for me it's itching. All over. Drives me Crazy!!!!
You sound like you are in much better spirits! Yippee! Your reply is helpful to all!
prtyblueyz said:
I feel for you. I wish I could say something to make you feel better. Just don't give up. If you believe that you do have Lupus then find another Dr. Try to take it easy and don't get to overwhelmed. Stress can make you sick. I don't get a rash on my face either and I had blood work done and a skin biopsy and was told I have Lupus so the rash on the face not being there doesn't matter. My lumps and skin rash on my arms and legs is what made me go see the Dr. Just hang in there and research as much as you can.
Hi! I have never commented on here before but have always received lots of encouragement. Sometimes it is comforting to know that other people feel the same things you are. I feel bad for your frustration. I totally understand. I just wanted to clarify having a positive ANA does not mean you have lupus. It usually does indicate an autoimmune disease. However, occasionally it is a false positive especially in women. It can even be positive as a result of viruses, etc. Have you had Anti DS-dna drawn? It is much more specific to lupus. A sed rate is just a marker for general inflammation in the body which can be caused from anything a sinus infection to cancer and everything in between. Unfortunately, lupus is difficult to diagnosis because there is not one yes or no definitive test. All this adds to frustration! Just keep doing what you can to help yourself feel better like you are. Be an advocate for yourself. Its not in your head but some doctors will make you feel like you are crazy. I know it can be difficult. (Sometimes a good cry helps :))Physicians are people just like us and sometimes they are just jerks too. Hang in there and I hope you get some answers soon!
Stress is a difficult thing. I started relying on yoga breathing a lot. I also use yoga stretching when I’m able and that is the biggest “feel good” I have found. Just a little stretching in the morning and my day goes so much better. Just remember: no natural remedies that clam to boost your immune system. The boosting is what had caused the problem in the first place. Good luck!
Explains why lupus is hard to diagnose. However, this is not an excuse for a doctor to tell you you're depressed and imagining things (total insult) when she/he can't figure out what's going on.
Keep the faith! Most of us have been through this "doctor thing."
Doctors should always dispense their prognosis with hope. If you think you’ve been subjected to some sort of medical “hexing,” go change doctors right away. You’re not crazy! Hope you find a good doctor there to help you with those symptoms and find out exactly what’s causing them.
Hi MoeMoe, sorry that they hive you direct answers-yet , smile . I was in the same boat (2yrs. ago) , when very bone in my body was in pain - i really wanted to kill myself .. Everyone was joking , saying this like of you are okay it's all in your head , BUT i knew the pain and what was going on with my body !!! So after deaLING WITH THE PAIN FOR ANOTHER MONTH , I SAID 4GET THIS NOTHING WAS WORKING . i HAD TO STOP WORKING and doing all the things that entertained me (came to an end ) , until i went to the doctor (am still seeing the same doctor from the very beginning & taking the same meds . (minus one ) from the beginning _ he really is GREAT !!!!!!!!!!!!! It really helped me to remain stable . Also there were moments that i would just cry (for NO REASON) -but i called my old doctor (phyc) and she alloed me to start my anti-depressants back and once my state of mind got back -some what alright to handle the problem of LUPUS , that stress and the activity of the was under control everything else fell in line .. So maybe the doctor was right - talk to a theraphtist , even if feel strange - it has really helped me MENTOINLY .... Hope things work out for you ,take care and talk with you later -Many BLESSING !!!! Beverly L.
It took me 6 years to get the diagnosis of lupus! I went to doctor after doctor without success . I had high sed rate, positive ANA, blood abnormalities, joint pain, raynards, etc. so I went to Dr Wallace, he diagnosed me with lupus with vasculitis . My painful search was over . So don’t give up. Sometimes it takes awhile before lupus gives itself up. In the mean time God bless.
I too ended up with Dr. Wallace after many unsettled years. I want to reassure you that he is probably the best doctor to see in regards to a lupus diagnosis. He is one of the pioneers in the field, and has close ties with both Cedars and UCLA and will direct you to the proper specialist if he finds that you don't have Lupus. You are new to Lupus and I know how frustrating the diagnosis process is. I've had 30 years of it! It is a disease that has many ebbs and flows, and almost always takes time to sort out. Your symptoms seem similar to what mine were when I started this journey. I think I was borderline for several years, but then the stresses that accompanied a failing marriage kicked it up into lupus category. I began seeing Dr. Wallace shortly thereafter, and have been able to keep my Lupus under control.
Try to take it easy and don't get to overwhelmed. Stress can make you sick.. but i know its hard . and the world seems unfair.. but think happy thoughts.. positive thoughts.. just know the storm does not last forever.. hugs...and pray...
While not having the same situation, my blood tests came back negative. They found it through a kidney biopsy. Because this is SUCH an incredible disease to diagnose and it is virtually different in every person. I know that I have lupus, but I do not have a rash either, I read that only 2/3 sufferers of the disease get the rash. So I am confused on the 4 out of 5 issue. There are so many symptoms that it seems silly to narrow it down to 5 conditions. I would definitely have another opinion.
and the world seems unfair.. but think happy thoughts.. positive thoughts.. just know the storm does not last forever.. hugs...and pray...