Hi everyone. I'm new here, but I have been watching and have commented on a topic or two.
I was "diagnosed" a few weeks ago. I put that in quotations because my doctor kinda seemed to be trying not to diagnose me, but she started me on plaquenil to see if it will help my symptoms. She said I could have a mild case of lupus or another connective tissue disorder (UCTD, MCTD?). She said I don't meet all the criteria (Do most people with lupus meet all the criteria? Four of eleven...). I was tested 3 years ago by a different doc bcz of symptoms. He was trying to prove that I didn't have lupus, but with an ANA of 1:2560, he had to acknowledge that something was going on. Recent tests show lower number (1:640, speckled), but still too high to be nothing. Recent urine tests show some protein in urine - not a lot. The doctor says that's okay, but the lab range says normal results should be zero. Have had a few tests like that.
Maybe I am reading too much into my results and they don't say what I think they say. Maybe I'm just driving myself crazy. I don't know. I have quite enough ailments and take quite enough medicine. Don't really want another diagnosis, I just want some answers. And I don't know if I have gotten any.
Thank you all for being here and listening. Good luck to you all.
Hey there and welcome to the community!! Sounds like you're having a difficult time being officially diagnosed-- sorry to hear that. But everyone's case of Lupus can be so different and unique and I feel like it's possible to have Lupus without meeting all the "criteria" as there are various symptoms for it. Have you possibly thought about seeking another opinion from a different doctor? And I would just continue to keep track of your symptoms and maybe just jot them down to present to your doctor. I just suggest this because before I was diagnosed, I had symptoms that I just brushed off, and I ignored them so badly that when my mom told my doctor about them, everything else pretty much made sense altogether. But best of luck to you and hope you get your answers soon!!
Hi Eden. Lupus is an interesting creature, that is for sure, but pretty much like any chronic disease one can acquire. Every case is different and the symptoms are numerous. If you need to chat any time, please contact me. Rest when you need to and try different meds until you find what works for you...it may take a while and it may change as time goes on. Take it from someone who has no one that understands what Lupus can be or do to you...just listen to your body and take care of yourself...Take care, Sandy
It sounds like you could use a second opinion from a different doctor. Maybe someone who is a little more aggressive. Plaquenil can be an effective treatment, but often times you need more. There are a lot of things that you can do in the mean time to help yourself. I love pinterest for a starting point for nutrition and exercise tips to help chronic illness warriors. I pin things nearly every day that are helpful. Get a vitamin D level done. If it is low, work on getting that up over 30 (preferrably closer to 50). Do not get in the sun or tanning bed! This will flare your symptoms and you will feel like crap. Get your vit D through whole foods and supplements. Allow yourself to rest! People always want to make their bodies keep going in spite of how they feel. They mistake this as “fighting” or “staying in the fight”. You can’t win a gun fight with a knife, and you can’t combat Lupus fatigue by “just keep going”. You will do harm to yourself. You must rest, and rest more than you ever thought you would ever need. You must not stop moving, entirely. You need GENTLE daily exercise (that’s mild walking and/or stretching). Do not overdo this! The object here is to maintain/improve mobility, not get ripped. Reduce your intake of refined sugars, preservatives, and other foods that promote inflammation. Drink plenty of water. This will help with swelling and inflammation. Do not minimize your symptoms. Start keeping a journal. It doesn’t have to be long and intense. I keep mine on My Fitness Pal. There’s a place in the food diary to write food or exercise notes. Under food notes I write if I’m having nausea, vomiting, diarrhea, or constipation, etc. Under exercise notes I detail how I’m feeling; migraine? Pain? Etc. I try to be as descriptive as possible. This actually helped me get approved for disability. Because I was able to show the judge what I deal with daily. It also helps me see foods and activities that help or hurt me. I’ll pray for you today. Please let us know how things are going. I’ll be watching for any new questions or reports.