Anyone here with lupus? Can I ask you some questions?

[Heavenly]

In December 2008 I was seen by a rheumatologist. I had a positive ANA and many symptoms of lupus but the doctor said it was fibromyalgia. Over a year later I am getting much worse. Some days I can barely walk or get out of bed. I don't doubt the fibromyalgia diagnosis because I have all of the symptoms but I do still wonder if more is going on. And fibro does not cause a positive ANA. So the doctor I see at the clinic (no family doctors available) has given me an order for a repeat ANA and also anti-DNA, sed rate, and rheumatoid factor. Not sure why she didn't do an anti-SM as well. Anyways I am going to get the bloodwork done again tomorrow and going to see the same rheumatologist again in 2 weeks. I still have all the symptoms and then some. My questions are - what symptoms did you present with? What were the results of your blood work? Did you have a difficult time getting the doctor to diagnosis lupus? Any input is appreciated.

I'll list my symptoms for reference - malar rash, itchy rash/hives, photosensitivity, mouth ulcers, hair loss (with major flares), joint pain, muscle aches, fatigue, low-grade fever, headaches, bleeding gums, breathing difficulties, chest pains, "brain" problems (confusion, forgetfulness, etc), and dry eyes. I also have tremors and limb spasms but I don't think that is related to lupus. Thanks for any input.

[Heavenly]

No one?

[ASusan]

Originally Posted by Heavenly

My questions are - what symptoms did you present with? What were the results of your blood work? Did you have a difficult time getting the doctor to diagnosis lupus? Any input is appreciated.

My symptoms were extreme thirst, kidney pain, and then, chest pain (costochondritis) and a clicking in my throat when I swallow. General achiness. My symptoms did not fit the typical lupus symptoms, which probably delayed my diagnosis somewhat.

First blood test was highly positive ANA. Second blood test, even higher. Did not get a positive lupus factor in my blood until a year or so after the first positive ANA test, and then I didn't "get" the diagnosis until 6 months after that.

I went to several doctors: PCP, local rheumatologist, urologist (because when they did a scan of my kidneys, they found abnormal ureter formation, but that turned out to be fine), endocrineologist, ENT (for the throat clicking, which turned out to be arthritis in my throat), then a rheumatologist in a nearby city. The last turned out to be the most helpful, and I stayed under her care until I moved.

The medications that were most helpful were:

a course of prednisone (for the kidney pain)
Plaquenil, which brought the costochondritis under control, BUT, it gave me ringing in my ears (a possible, but not common, side effect).

So then, what CURED me, was weekly acupuncture and Chinese herbs for 6 months. Terrific TCM practitioner. Totally addressed all the random symptoms that the Plaquenil didn't address (left-over kidney pain, overall achiness, weird periods, cold feet, urinating several times each night, some thirst...). I weaned off the Plaquenil during those 6 months. Three months after I stopped acupuncture, they did blood draws (11 vials) and 3 vials of urine - NO signs of ANY autoimmune activity/lupus in my blood. Totally normal bloodwork.

I've been fine since then (except for the throat clicking, which never went away but I rarely notice it). That was 3.5 years ago.

[EyesOfTheWorld]

I haven't been diagnosed with lupus, but it's what my doc thinks I have. I see the rhematologist soon - I also have positive ANA. Heavenly, my symptoms are almost exactly yours, right now to the tremors and spasms! On top of that I just went through hell with as of yet undiagnosed liver related issues (now subsided a bit) that the doctor says may or may not be related to the possible lupus. I've had several MRIs & cat scans to rule out MS and others.

I don't really have much to add, I just wanted to commiserate and let you know you're not alone. How are you feeling?

[OdinsMommy0409]

I have very similar symptoms to you, but my blood work generally is borderline. My mother has had lupus for 20 years now and my grandmother for even longer. I've had my PCP do everything but diagnose me as I frankly don't want the diagnosis in my medical records at this point.

I've found diet & lifestyle changes have made a huge difference in my flareups and their severity. I'm hoping to avoid medications for as long as possible due to previous liver abnormalities. During flareups, I focus on stress management and often take Rx anti-inflammatory for 6-8 weeks.

Generally, SLE takes an average of 5 years to diagnose. My mother was diagnosed in the ER and my grandmother in the cardiac ICU both of them after years of ?s and doctor visits for "general signs and symptoms," and I just avoid the official diagnosis for insurance/medical records purposes.

Good luck with getting a diagnosis. I know it can be a comforting thing both to hear it and then more importantly really find a course for treatment to lessen flareups and their severity.

In the meantime, you might enjoy this.
http://www.butyoudontlooksick.com/
And, I find this is a great metaphor for explaining how life with chronic illness works.
http://www.butyoudontlooksick.com/ar...e-miserandino/

[juules]

Look into healing the liver, kidney and possible food allergies. If you have gas or indigestion or constipation these are signs your body may have food sesitivies. You can heal your body and not be stuck with the diagnosis for the rest of your life. I was hypothyroid but healed my body with eating living foods and removing toxins that had built up in my body. I wish you health and healing.