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Lupus or not Lupus?
8 years with either wild goose chases, no tests and it's stress or tons of expensive tests and we don't know. Consistently they look for Lupus. I had 3 years of ANA positive results then switched doctors (insurance reasons) to end up with a new doc and new labs that show ANA negitive every time. So then obviously no lupus, right? Now 7 months of fever...still ANA negitive they think maybe lupus was the right diagnosis but until it shows positive they run more tests. Epstein Barr, Cytomegalovirus, Thyroid panels, etc. I have a fibromyalgia diagnosis but so many other symptoms don't fit so I am in a constant loop and feeling worse every day and more frustrated. I am not sure what to do next. Another doc, another lab, give up and quit trying to find out why I am so sick?
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I have been all over the map with auto-immune disease symptoms, tests, etc., and I will add this: I was constantly looking for a specific diagnosis. I just wanted an answer. What I've learned is that it isn't that easy. There isn't a specific treatment even if you get a specific diagnosis. They treat symptoms, not the disease itself. For me, I had doctors that said probably Lupus, a doctor that said sjogrens, etc. But the bottom line turned out to be that it really doesn't matter which of the hundreds of auto-immune diseases it is because they treat the symptoms, not the disease. At least this has been MY journey. So after years of not knowing specifically which auto-immune disease I had, and being treated for a lot of various symptoms (usually with prednisone), I ended up having 2 heart attacks. A heart biopsy verified that I have lymphocytic myocarditis, and I received a heart transplant. But I also have various other auto-immune diseases, including psoriatic arthritis, fibromyalgia, and a few others. Again, when symptoms flare up, they get treated. I hope this is helpful for those that just want an answer. Sometimes, there isn't a specific answer. And I'm ok with that now that I truly understand how it works with treatment.
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4 ReactionsTo @michelecallahan, thank you for your reply and totally grasp the concept of what you are saying. I agree that a specific dx is not necessary, but my Drs are not even treating the symptoms!!
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Then I would say it's time for a new doctor! It's so important to find the right doctor(s) and have that trust that they are working FOR you. If not, it's time to move on and find the right person. Good luck on your journey!
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1 ReactionNo, you are not crazy. It isn't "you". Sometimes it isn't even the doctors. I posted months ago now, about finally being diagnosed with Serum Negative RA. Three years ago. He was a rheumatologist, he was just the best. After so many years of the revolving doctors who also get frustrated, I could not believe what he was telling me. He was much younger, not that matters, but I think it may help. He also was personable. He told me, that too many doctors rely only upon lab tests. He said you limit your patient's when you do that and you are not fair to them. I saw him for one year. I started the long road to better health. You always have to start at the beginning with the drugs. So, Methotrexate was up. It helped my energy level which was so poor. As you all know, autoimmune diseases, no matter what they are, sap you until you cannot move. Then, he resigned from that practice and moved. UTSW is a long painful and difficult trip for me. I can't drive, which means getting Medicare transportation. So, I stayed with that group and went to another rheumatologist. She was just terrible. She did not believe I had RA. She gave me Meloxicam, which I had years before etc. Anyway, I called his new office and it took me six months to get in. In that time, my knees, which had never hurt, became agonizing. It crippled me. By the time I saw him in July 2023, he didn't even bother with anything else and put me on Humira injections. My brother takes them for Psoriasis, and claims they did not work. That isn't true, FYI, because he cleared up. It does take a while but by the fourth injection, I could walk. And that was without pain. That was at Thanksgiving. He did repeat blood work, and it was the same. My hands were becoming deformed and they and my feet were bothering me more. But my knees had just ruined my life. So, here is the thing. After injection six, I noticed I was sliding backward. My hands and feet were worse, my jaw, where I have one arthritic joint was very painful, and my energy level went downhill. I was laying in bed all day on some days. Something I had never done. Well, this same great doctor, resigned from THAT practice and went to do clinical trials. My knees, although not as painful, I knew had to at least do something about that so I went to an orthopedic doctor. He was concerned about my other issues and also told me both knees needed to be replaced. He recommended a friend of his who was a Rheumatologist. So, I thought, sure, why not? He called him personally and asked him if he would see me. So, two weeks later, I went to see Dr. Cohen at Christus Mother Francis in Tyler, Texas. He was much older, but he did not miss a thing. He read my entire history printed it off to study, and asked me everything. I told him things I was having problems with I had never told anyone. So, he took a lot of blood. Those 28 tests you mentioned. It was the first time I had ever had those tests run. Ever. By anybody. It took ten days to get the results, including a weekend. And I do read all my tests and doctors' notes. Always. And, was I shocked? I have Lupus. And I have the RA in my hands and my feet and my knees and ......Do you know what the Lupus Foundation of America calls Lupus? The cruel mystery. They use purple ribbons. Now, I am 72. How long have I had it? Who knows? My guess is from the time I was in my late thirties. I remember the pain and all the medicines and struggling to work and all the side effects. I thought I was crazy. It couldn't all be aging. I am not saying that is what you have, only a doctor can tell you. But don't stop asking. Talk to them about all the autoimmune diseases. Lupus, there are different kinds. And, btw, I never had the butterfly rash they look for. But my skin cannot take the sun. I just bought a book entitled The Lupus Encyclopedia. And in his preface, the doctor talks about the terrible challenge for doctors and patients. Not everybody has the same thing. And some women were borderline. But they take meds. I hope, really, any of this helps.
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4 ReactionsYou are not crazy, and props to you for advocating for yourself and asking for a referral to a rheumatologist. Thatās a great next step, and also donāt be afraid to keep asking and change rheumatologists if you donāt feel theyāre the right fit.
I donāt have lupus, but I have an autoimmune arthritis called seronegative spondyloarthropathy. Pain can be severe even though lab tests for all the inflammatory markers are normal. Joint damage from x-rays or MRIs may take years to be revealed to āproveā the diagnosis.
Suffice it to say, it was very difficult for me to get a correct diagnosis. I was seen at Mayo Rochester for a full workup after seeing three rheumatologists in Chicago at major medical centers, and the rheumatology team at Mayo misdiagnosed me.
I can relate to that feeling of being crazy. After all, if the great and powerful Mayo concluded there was ālow suspicionā of an inflammatory or autoimmune condition, then clearly I must be crazy, right?
We all deserve quality of life and healthcare providers who believe and will support us, to help find answers, but also to help us connect to the best fit treatment as well. Wishing you all the best!
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