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Date of last update: 8/21/2017.

Forum Name: Rheumatology Topics

Question: My doctors have argued about diagnosis, could it be Lupus?

 angelforever34 - Tue Sep 20, 2005 7:31 am

Could I find out where Lupus causes inflammation at in your body? Is this a disease that will mainly affect your organs or does it primarily cause muscle/tissue inflammation? I don't know if I have any tissue inflammation but I've had past ANA's of 1:320 homogenous, a negative one, then an ANA of 1:640 homogenous pattern last month. I've had trouble with muscle pain for 5 years but during the time of the negative test, my muscle pain was gone for awhile & only had back pain. It came back as widespread spasms, numbness & tingling. I've also had kidney pain for a year now with history of hydronephrosis of unknown cause. My insides seem to be taking an attack of inflammation lately. I have gastritis, duodenitis, esophagitis, erosions, sore throat, fluid in my ears, neck pain, swollen glands, oral Candida infections, repeated mouth ulcers & scarring on one of my lungs. I also have a severe IC bladder disease. Have had repeated UTI's, yeast infections, URI's and have been suffering from extreme fatigue lately & recurring headaches. And I've had alot of medications that seem to really flare my problems up which extremely concerns me. My doctors have been unable to tell me why. Does this sound like SLE? My pcp said I had FMS but the diagnosis was only because he couldn't figure out what else was wrong but the rhematologist I used to go to said I had UCTD & could later end up with Lupus if the ANA got higher but my PCP didn't seem to believe him. He also said not to worry about this ANA because I had past ones that was positive & he didn't see any need to go back to my rhematologist. I don't think he much believes me either. I would really like to find out if I have Lupus. Are there other tests that can be used to confirm a diagnosis?
 DeLWolcott - Tue Sep 20, 2005 8:28 am

The decision to return to your rheumatologist should be your decision. Will you be returning to the same rheumatologist? I don't know the rules on your insurance as for return referrals, but since you are a returning patient you probably wouldn't be required to get another referral from your PCP.

The questions you are asking should be answered in person with your physician. Your primary care physician should also allow you to get the answers you want even if that means going back to your rheumatologist.

Good luck!
 angelforever34 - Tue Sep 20, 2005 11:06 am

Thank you but I do not have any plans to go back to my rhematologist. I've recently started going to a neurologist & I didn't need permission to do so. But I have serious doubts that my pcp would answer any of these questions for me. He doesn't even want tests done on me. An ER doctor wanted to admit me in the hospital but I'll give you one guess as to who said NO. The doctor in his office that did the ANA test accused me of making up having the spasms, claimed there wasn't any tests to find out if it was even so and then proceded to tell me that people come in that office and make up having pain just to get pain meds like Lortab. My pcp would know that was bull as I never ask him for such meds but he's really ignoring my health problems. And that I just don't need!
 DeLWolcott - Tue Sep 20, 2005 12:33 pm

Sounds to me likes it time for a new doc. Good luck!
 angelforever34 - Tue Sep 20, 2005 10:04 pm

I actually like the doctor I have, just don't care to be treated like there's nothing wrong when I'm feeling so sick. Thanks for the advice!
 DeLWolcott - Wed Sep 21, 2005 11:07 am

Your concerns should always be taken seriously...and you should never have to leave a physician's office without firm, factual answers to the questions you have.

You take care and keep strong in your quest for you answers!
 angelforever34 - Thu Sep 22, 2005 11:20 pm

I agree 100% but I don't know what to do. I don't know how I'd find any doctors any better than the one's I have. But they like won't answer me when I ask them questions. And it's more than just one doctor. I asked my urologist the other day why my kidney would hurt when I have the urge to go the bathroom. No response whatsover though he did seem concerned about it. I've asked multiple doctors why alot my medications make my pain so much worse. It's just like talking to the wall. I have no explanations to why I've had kidney pain for a year or why I'm having widespread spasms & numbness. I went until recently with no treatment for it whatsover. My neurologist told me today that I have connective tissue disease, said I meet the criteria but he didn't do any blood work to check the antigens to see for sure. So how am I supposed to think he even believes that? If he did, why wouldn't he check to see what kind of connective tissue disease it may be? He diagnosed me with MPS but I kind of already knew I had TMJ. This feels like a nothing diagnosis. It's not answering my questions at all. I called and made an appt with my rhematologist but it'll be 4 months before I can see him again. What in the world do you do when your doctors fail to do the appropriate testing to find out what's wrong? I really can't stand being sick like this and not knowing why. I had my ESR & CRP checked & they was in normal range. How could that even be possible when I have all of these inflammatory problems? I wonder if that's why my neuro didn't do any additional blood work.
 angelforever34 - Sat Nov 12, 2005 10:25 am

Just wanted to take a moment to thank you for your advice. I went to some new doctors even though I had some hesitency about doing it and it didn't take long to find out what's wrong. I have a parcel blockage to my urinary tract. And my urinary tract problems are even causing the muscle pain & numbness I have. It's affecting my kidneys and I could imagine the outcome of this if I hadn't taken your advice. So I just wanted you to know that time you took to help really made a huge difference for me.

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