Frustrated and in need of support

Today I called my doctor to get an early update on my blood work before my next appointment. They came back normal again. I am so upset and don't know what to do next. I am sure it is lupus, it is the only thing that makes sense and I just know deep down. My GP agrees but my Rheumy seems to be relying on blood work alone. What can I do to get through to her? What is my next step? How do you guys deal with this upsetting feeling. Please give me some advice.

I recommend you keeping track of your daily symptoms and next time you go to your GP or Rhuemy take that list with you. Any symptom you experience write it down! It took my doctors awhile to diagnose me too and when they finally did (11 years ago) it turned out I have Lupus Nephritis and Rheumatoid Arthritis. Good Luck and don't give in to the doctors, listen to your body!

It took me 4 rhuemys until I finally got the diagnoses 4 yrs later. Keep fighting and stay strong. Work through your primary in the mean time. I used to research and then make
Suggestions to my GP to try and luckily she listened. She was who got me through those yrs. it was the hardest yrs of my life, ecspecially since you’re not feeling well and having to go to a million appts to try to prove your case and working full time. It’s enough to drive anyone nuts. Gentle hugs and strength for this unpleasant journey.

I’m sorry you have an “old school” rheumy. The new protocol for diagnosis is different. Positive labs are only one part. If you have something like 5 out of 7 symptoms then you can be diagnosed without positive labs. The only one you have to have is the malar rash. I can’t remember the rest of the criteria right now but I know it’s available online. Good luck!

I am so sorry that you are going through that! I was just diagnosed last Friday and it has been a year since this first started. Even with positive bloodwork my first doctor was not aggressively figuring out what was going on. It took my second doctor to actually make progress, one major difference was my new one told me from the start that he did not rely heavily on bloodwork and had issues with low titer results and their reliability. I feel like he was more on top of the new research that was going on with Lupus. The other seemed inattentive and just didn't really care about me as a patient.

I know insurance can be weird about referrals and such, but I would suggest getting a second opinion from a different rheumatologist. From everything I have read on here and in research finding the right rheumatologist seems to be key!

Michelle, I'm sure I had lupus decades before my diagnosis--which was accidental. I had been dragging myself to work in a high stress job for about 15 years. In 2006, I had hand surgery for a ganglion cyst and the pathology report came back positive for severe inflammation in the tissue versus a ganglion cyst. To take a step back, my former primary care physician (PCP) NEVER ran thorough tests for thyroid disease and I had the symptoms for 10 years before I went for a second opinion and was diagnosed with hypothyroidism. I have learned that autoimmune disease often has "friends" they "run around with." You don't find one without finding another or even clusters of them which I now have. I was kicking myself when I walked in the rheumatologist's office and he said, "Your hand surgeon thinks you may have lupus." But then all he would diagnose was "connective tissue disease" even though I had all of the symptoms of Lupus that are the criteria for a lupus diagnosis. Even my ANA and anti-DNA were positive...but he said "a low positive." Then, I decided it was time for a second opinion, so I went to a rheumatologist my PCP doctor referred me to---she was also head of the lupus chapter in my area and frequently gives speeches on lupus at conventions and patient forums. After I sent her copies of all my files and labs and she met me at our first appointment, she had no problem diagnosing me with lupus (SLE). She wrote a five page analysis confirming her diagnosis. I will always be grateful to her for taking so much time with me! My low positive ANA had changed to negative, but she said the meds the other doctor put me on (esp.Plaquinil) could make the positive ANA turn to negative. I think she would have made the diagnosis without the labs showing positive ANA and anti-DNA in the past. I will ask her next time I see her. The U.S. Dept of Health and Human Resources puts out a booklet "Systemic Lupus Erythematosis" Mine is an old booklet #03-4178--I think you can contact the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) which is a part of the Dept. of Health and Human Services to get a copy. Their website is and their phone is 1-877-■■■■■■■■ or1-301-■■■■■■■■. It gives you the criteria is for a lupus diagnosis. SO, do go for another opinion, and as Ann A told you, ask questions when you call inquiring about an appointment. This site will be SO valuable in helping you navigate issues. You can learn from others and it will save you time and give you much more----empathy, information of all kinds and COMPASSION! All the best to you, LupanCatwoman

I to had many blood test that were negative over and over, then i got the call on thanksgiving that the test was positive. I have been told they dont think it is lupus to yes you have sle lupus but you meaning( I )fall into the group where its not attacking my organs so its up to me to stay on the medication or get off. so i have been off the meds for almost four years. I stand with you and im praying for you, and always know you are not a lone and theres a whole lot of us dealing with this. The bible says this to shall pass and it will, you may be down this week but next week will be better. be blessed Godsgirl66

i had the same problem. I got firm with the dr and said look, this is ruining my life. i want you to fix it, or i will surely go insane. I went in with a list of my problems and how long they had been going on. I did get plaquenil, and it helped but not as much as i hoped. went back, got celebrex, i think thats a waste of a $25 monthly copay but....not sure yet. Also later diagnosed with raynauds.

its very depressing. some days i dont even want to get out of bed.

I completely understand what you are going through.

Michele , this disease is a frustrating one for sure. I was somewhat relieved after my diagnosis, though bc at least we knew what the " something " was, then. I have felt like a liar when have gone to doc appt only to hear how great my lab work turned out and I would sit there saying how awful I was feeling and in so much pain. Sometimes the tests do not go along w/ how one is feeling. The opposite happened ,too when I would get a call about tests showing disease activity and I was feeling pretty good. It is not a totally precise science. , the practice of medicine. There is so so much unknown about Lupus. We all get frustrated - hang in there. Thinking of you.

there are over 100 auto immune diseases so it is very possible that you could have something other than lupus. Do you body symptoms go along with lupus? Problem here is that lupus body symptoms could also be for over half the autoimmune diseases and many others so it is hard to say it is lupus for sure.

I do though understand your frustration and would say to ask the doctor who is diagnosing you to ask what next step should be...what would they do? Try internist? is there excellent doctor they know in diagnostics they could refer you too?

Personally, i think you are getting good news as i do not wish this or any disease on any person but on other hand i get you would like a name for what is wrong with you. I just say, try to keep open mind, do not lock into it being many similar diseases that mimic lupus and it is symptoms.

I would try to find a doctor you trust who is excellent in diagnosing so you can finally either find out you have some disease or be able to be happy that you do not. Good luck and i think getting 2nd opinion is excellent place to start if you do not know where...but i ask your doctor those other questions first.