Undiagnosed and meeting with primary care. Feeling nervous.
Hello. I have had odd symptoms on and off over the years but recently I put them all together and now wonder if it could be lupus. I'm hitting many of the markers (joint pain, muscle pain, fatigue, unexplained weight loss, sores in mouth). I was reluctant to make an appointment in fear of looking like a "hypochondriac" but after reading many articles and the discussions here I felt it best to go. I had a few questions that I'm hoping someone can answer:
1. Do joints hurt all the time? I feel like my knees and hips are constant but the pain in my fingers jump between different hands.
2. When speaking with my PC, do I just come out and ask to be tested for Lupus?
3. How suddenly does one start to lose weight before a diagnosis.
My apologies if this post does not flow well. Just trying to organize my thoughts...Thank you!
Hi
and welcome to the community!
I know dealing with mystery symptoms and not having a diagnosis can be hard, but I am glad you are pursuing answers. You deserve to have your concerns addressed and getting treatment can improve your quality of life, so don't worry about being seen as a hypochondriac.
While your symptoms sound like Lupus symptoms, I can't offer your a diagnosis or input, for your safety. There are other autoimmune conditions that share symptoms with Lupus (like RA, Psoriatic Arthritis, and the like), but the weight loss element is definitely more of a Lupus symptom. Some of our community members deal with pretty consistent joint pain, while others experience long stretches with little to no joint pain. I don't know if you've already checked out our symptom information on the site, but here's a link, just in case -- https://lupus.net/symptoms. I would definitely plan on going in with a list of your symptoms (and how long you have been experiencing them) to discuss with your doctor. And you can ask for specific tests to rule out Lupus and other autoimmune conditions. A specific panel of bloodwork is a good place to start -- https://lupus.net/blood-tests. You can also ask your doctor for a referral to a rheumatologist, especially if your bloodwork shows a possible diagnosis of Lupus.
I know dealing with doctors can be intimidating, but you are the own expert on your body and if you know something is off, well, then something is most likely off.
I do hope you get some helpful feedback from other community members and can maybe offer more tips and suggestions.
I hope the appointment is fruitful and that you get some answers as to what's going on! Keep us posted, if you feel comfortable doing so.
Best, Erin, Team Member.
I totally agree with you. I think they ran about 25 tests. Long story short he says I don't have lupus but referred me to a urologist as they see moderate levels of blood in my urine. I have a future appointment with my new rheumatologist on the 18th. He brought up possible SLE and mixed connective tissue disorder. I know I am not crazy with what I am feeling but the rheumatologist seems to be downplaying all my tests that came back elevated "mildly" he says. I feel so discouraged right now. ugh, that sounds incredibly frustrating, and definitely understandable why you're feeling discouraged right now. What a challenge to feel the doctors are downplaying your symptoms when you know your body, and you know something is going on! It sounds like you have more appointments and doctors to see, but would it be possible for you to get a second opinion? Please don't hesitate to continue to advocate for yourself! And, if you're comfortable, let us know how you're doing and keep us posted. Also, I imagine you might already know this information, but I did want to link an article here about diagnosing Lupus, https://lupus.net/tests. Unfortunately, it's one of those conditions that can be quite difficult to diagnose. Please don't hesitate to reach out here! Sending you gentle hugs. -- Warmly, Christine (Team Member)
Yes, it sounds as though you are on the right track!
There are so many autoimmune diseases that you can have right along with Lupus. Please try not to be discouraged. It can be a long tedious trip down the diagnosis road.
My blood tests weren’t “that bad” so it’s not Lupus my doctor said. I was diagnosed with a kidney disease and every doctor would say that it was odd as it was the same kidney disease that people who had Lupus get. Well, if it looks and quacks like a duck it’s most likely a duck! So was the same with Lupus.
Be persistent. Be your best advocate. Only you know your body best. AND if you feel like you aren’t being heard, look for someone else. We are all different so what and/or who works for one may not for someone else! Change doctors if you have to, it’s your right.
They say the squeaky wheel gets the oil. So too with this. Keep on until you get some answers, a doctor who you like and who listens is crucial.
Keep on coming back here! There are so many great people who can relate. While they can’t diagnose, they can give you support.
Best of luck.thanks so much for sharing your experience and advice! You bring up so many good points about the diagnosis process as well as advocating for yourself. Despite your blood tests not being "that bad" were you finally able to get a diagnosis? Can I ask you how long it took? And how are you managing currently? Have you been able to get doctors to listen? Are you on a treatment that is relieving some of your symptoms? We appreciate you being a part of the community here! Sending you gentle hugs. -- Warmly, Christine (Team Member)
good morning. It's crazy you stated you had a kidney disease as they found a moderate amount of blood in my urine. They retested it twice. I have no infections nor bacteria so they referred me to a urologist. I can't get in until April 1st. I don't know what to do Hi
, that's great that you have an appointment, although I know that April 1st seems a long time away. Some people have had luck getting on a cancellation list at their doctor's office, which might be worth checking into (if you haven't already). I wish that you had some answers right now, and didn't have to wait. Are you having other symptoms? Please don't hesitate to reach out here if you have questions or are looking for other information! Sending you gentle hugs. -- Warmly, Christine (Team Member)
