I am at my wits end. Symptoms: fevers, achy, fatigue, skin rashes, dizziness, inflammation, chest pain, swollen glands, low potassium, chronic UTI's, headaches. I also have trouble with cysts showing up in my breasts that start out appearing solid (resulting in expensive tests), then suddenly disappear. These symptoms come and go and don't respond to any medications the doctors have tried. I feel like my immune system is shot and always feel dehydrated and malnourished even though I eat well and drink mainly water.

Every doctor I've seen, based on reviewing my records and examining me, says lupus. But . . . the tests come back negative. I've also had my heart and kidneys checked, bone density, x-rays, tests for arthritis, etc. done. Everything comes back normal.

Can tests be wrong? It seems odd that the symptoms and flare-ups are so obvious, yet whatever the underlying problem is it doesn't show up on tests. Tests do show inflammation, elevated WBC, and low potassium - but no major culprit. Any ideas?
Did you find this post helpful?
|

User Profile
replied March 12th, 2009
Community Volunteer
Have you seen a neurologist?
|
Did you find this post helpful?

replied March 12th, 2009
Yes. He also thought lupus or arthritis. I was sent back to my regular doctor who ran the tests again and they still came back negative.
|
Did you find this post helpful?

User Profile
replied March 12th, 2009
Community Volunteer
Did your neurologist rule out MS?
|
Did you find this post helpful?

replied March 12th, 2009
No - that diagnosis wasn't even considered. Seven years ago my doctor did some blood work which indicated I was on the borderline for lupus and that arthritis was present, mainly effecting the chest wall, ribs, and sternum. The blood work done last week showed no indication of lupus or arthritis which leads me to wonder if the tests are all that accurate. I didn't think that lupus or arthritis come and go like that especially since I haven't been treated for either. Not sure if there are other illnesses that have similar symptoms that "fool" tests causing the fluctuation in test results.
|
Did you find this post helpful?

replied July 6th, 2010
Hello mc4314

Thank God there is someone out there with the exact same problem(s). I have all of your symptoms to point T, and almost all of lupus traits...and my ANA test came back negative as well-still no answers. My doctors, as well as myself thought lupus to be the culprit in all this, but to my later demise, an ANA negative. I have had chronic ongoing health issues this past year, its really been extremely hard and frustrating to say the very least. Over this past year, I have seen doctors, and they ALL are completely baffled by my VERY noticeable health problems to severity. Currently I am trying to investigate just why I am having almost every single Lupus symptom, yet not a positive test to support the obvious symptoms. The amount of frustration and heartache; in trying to find a diagnosis is beyond difficult to handle-I understand. Have you ever heard of an ANA-negative Lupus??? It does exist in fact there is a VERY small percentage of people with this rare type of Lupus, however, it is possible, and should be investigated more. Look up ANA-negative Lupus via-internet, and remember that our bodies are real complex, and sometimes "we" learn about ourselves, and the greater depth of life when going through this. Keep going at it, and I will do the same. Bless you, C
|
Did you find this post helpful?

replied July 6th, 2010
I'm sorry to hear that you're dealing with the same thing. I'm also sorry to say that my doctors haven't pinpointed a diagnosis yet.

Since my last post, a blood test showed monoclonal protein in my blood. An oncologist is overseeing my case now - though he feels cancer is at the bottom of the list of posibilities.

Thank you for the information about ANA-negative lupus - I will look into. Also, I have an appointment with a rheumatologist in a month to see what she can rule out, so I'll be sure to ask about it. To my knowledge, the ANA test is notorious for false positives AND false negatives - this leaves doctors to apply a diagnosis if the symptoms fit. I'm dreading the thought of lupus since it is not curable. The doctors said other possibilities are a variety of auto-immune disorders (including thyroid and parathyroid), a smoldering cancer, or a rare blood disorder. Hopefully it's something simple and easity treated.

It is so frustrated knowing that the doctors basically have to rule everything and anything out to corner whatever this is - but, I'm thankful that my doctors are not only patient, but aggressive with this. I hope your doctor is the same.

Good luck and take care.
|
Did you find this post helpful?
Must Read
Learn the basics about autoimmune disorders, including risk factors, diagnosis, and treatment options. ...
Learn about risk factors to developing an autoimmune disorder. ...
Learn about screening and diagnosis options available for autoimmune disorders....