Lupus Diagnosis: One says yes, other says no! I am about to give up. PLEASE give me advice.

I have been feeling very sick for months. Getting worse every day.
Yesterday, my primary doctor said I probably have lupus based on my lab results and symptoms.

RESULTS
ANA titer= 1:80
Homogenous pattern
Anti DNA Native dble strand= value 1
Rheumatoid factor= <10
B12 level= 132 (pernicious anemia)
Mitochondria M2 ab, IgG= 0.25
Protein in urine (not sure what level)
White Blood Cell Count: 3.7 (normal is 4.0-10.5)

SYMPTOMS
-Feeling fatigued and generally unwell for months
-Muscle Weakness
-Blue Toes
-Swollen, tingly hands and feet
-Sometimes veins will get very large and feet with get very swollen and hot
-Pernicious Anemia
-Hair loss...just coming out everywhere. Very thin and wiry around front. Not "patchy".
-Rash: sometimes small red dots on legs, arms, chest
-Rash: sometimes redness across nose and cheeks
-Rash: sometimes a "fish-net/mottled" reddish purple on legs and arms
-CONSTANT burping and reflux
-Sores in mouth and on tongue
-Headaches
-Memory loss, confusion, mixing up my words
-Full feeling. No appetite. Sometimes will regurgitate food after eating.
-Constipation
-Weight loss (115 lbs to 93 lbs in 3 months)
-After taking Bactrim: severe rash (all 3). Very swollen ribcage, especially bottom left rib. Sharp stinging/stabbing pains from left rib all across to the left back. Peripheral neuropathy. Tight chest and shortness of breath.
-2 days ago; after long+unprotected sun exposure; reaction similar to one above. VERY severe rash (all 3). General swelling, especially of ribcage and bottom left rib area. Same sharp stinging pains along ribcage and back. Swelling has gone down with Motrin, but some stinging still. Shortness of breath. Burping.


SO...My primary doctor thought it was lupus. She did an EKG and heart rate looked ok, but she wanted x-rays and things for my heart, lungs, and kidneys IMMEDIATELY to check for damage. She also said I needed to get on something to control my immune system immediately, so off I go to the referred rheumatologist.

The Rheumatologist says the labs indicate it is NOT lupus. He says it all looks good. WHAT?
He said my ANA was borderline (1:80), but the lupus test (anti dsna) was negative? ok. Then why did my primary say otherwise? I looked online and several sources say that HALF of people with Lupus will have a negative anti dsna. Wouldn't he know that?

He thinks it's a combination of things, and suggested I take lyrica because it might be fibromyalgia. Fibro doesn't cause rash like that! Or, like, a billion of the other symptoms I have.

He won't put me on anything else. He didn't do x-rays or ultrasounds. He is running some other autoimmune tests.

I'm so frustrated right now. I'm going back to him in 2 weeks for follow-up, but I'm terrified that if it IS lupus, I'll have another flare and this one might be my last. It makes me bed ridden for days. I'm terrified. I'm in pain. I want answers, and I finally thought I had a name for what was hurting me so much, just to have it taken away from me.

Can someone please tell me what to do? Does this seem like lupus? I am losing hope and the ability to even care.

Post Edited (Queen_Ghost) : 4/30/2014 2:23:31 PM (GMT-6)

Lynnwood, I will check those out, thanks.

I just don't know what to think about this Rheumy. He said that lupus only causes hair loss in patches, unlike mine which is coming out in large bunches all over, especially around the hairline. I read several sources that said there is ALSO diffuse hairloss, which is exactly what mine is doing. Why would he say that?

He also advised me to wear sunscreen...which I found odd, since he doesn't think it is lupus. And I don't think that fibromyalgia causes a rash that gets terribly worse with Bactrin/Sulfa drugs and sun exposure, which I have.

I'm very sun sensitive so I wear special sun protective clothing I found online. Go to coolibar.com or sungrubbies.com.
I love my coolibar clothing because it's light weight enough for the hot summers in the south.

Hi I'm sorry that you're having such a hard time at the moment. Lynnwood has given you loads of good advice. I know it's really hard to wait this out. Lupus though is the disease of 1,000 faces and is very difficult to DX.

I know you're worried about your organs, but primary care doctors are not experts on Lupus and how it affects us. I've had lupus for over 26 years now. It took my Dr's 13 years before they officially said yes, I have lupus and began to treat me. Lupus varies from patient to patient some are so mild that they need no medication others are so severe that they are really sick.

I'm in the really sick side of things. I have heart, and lung involvement really bad. To try to help ease your mind a bit IF your heart was in serious issues, the EKG would have shown something. Whenever I have pericarditis and it's bad it will show up on my EKG, or my Dr's can hear the rub. With our primary doctors not knowing a lot about lupus they tend to over react.

I also have RA, and Fibro as well as LGL Leukemia and I know that my RA causes a lot of the exact symptoms my lupus does. I'd keep a journal of how you're feeling and take photos of any rashes that you may get. It is important to wear sunscreen even if you don't have lupus so make him happy and wear it when you go out. Write down how you feel when your out in the sun and take photos if you break out in a rash.

Take all this info to your appointment and see what he has to say. Many lupus patients go thru several Rheumy's before they find the right fit. I hope you start to feel better and if we can be of any help, ask away. Let us know how things go.

Hugs,
Barbara

I go to a kidney doctor for my kidneys because my rheumy doesn't treat kidney involvement.

This happens all the time. You can see another rheumatologist to get a second opinion-and he'll probably run his/her own tests. Your low B12 (looks like it's time for another shot for you-I have pernicious anemia too) could be making you tired and so can your rbc's which are a little low.

A good rheumatologist will also consider your symptoms-and check your wbc's, sed rate and complement levels for signs of inflammation. If you feel ignored and uncomfortable with that rheumatologist-find another one. As you mentioned there IS such a thing as ANA negative lupus.

The important thing is that your symptoms are treated. If you are spilling protein in your urine and your creatnine level and bun are high your GP should refer you to a nephrologist. If your rashes are bad and need special treatment-see a dermatologist. Besides a derm can biopsy any particulary bad ones to see if it's lupus or autoimmune related. Pretty much ALL rheumatologists refer you out for any organ damage anyway.

As far as your disease progressing because the docs don't think you have lupus-I don't think you should worry too much. Lupus hits in flares & your GP is testing you and monitoring your health-I would ask her about trying plaquenil (the gold standard) and see what she says....or for a particularly bad rash-ask her about treating it with steroids-if they help-it gives you a clue that something autoimmune is going on.

A very wise rheumatologist told me that ANA is not an accurate marker of disease activity. Some will consider your symptoms more than others-you know the criteria I'm guessing-the ACR suggests that if you have 4/ll of these symptoms that a dx of SLE is possible:

The following are 11 criteria used for diagnosing systemic lupus erythematosus:
• Malar (over the cheeks of the face) "butterfly" rash
• Discoid skin rash (patchy redness with hyperpigmentation and hypopigmentation that can cause scarring)
• Photosensitivity (skin rash in reaction to sunlight [ultraviolet light] exposure)
• Mucous membrane ulcers (spontaneous sores or ulcers of the lining of the mouth, nose, or throat)
• Arthritis (two or more swollen, tender joints of the extremities)
• Pleuritis or pericarditis (inflammation of the lining tissue around the heart or lungs, usually associated with chest pain upon breathing or changes of body position)
• Kidney abnormalities (abnormal amounts of urine protein or clumps of cellular elements called casts detectable with a urinalysis) Note: Ultimately, in patients with kidney disease from systemic lupus erythematosus (lupus nephritis), a kidney biopsy may be necessary to both define the cause of the kidney disease as being lupus-related as well as to determine the stage of the kidney disease in order to optimally guide treatments. Kidney biopsies are often performed by fine needle aspiration of the kidney under radiology guidance, but in certain circumstances, a kidney biopsy can be done during an open abdominal operation.
• Brain irritation (manifested by seizures [convulsions] and/or psychosis, referred to as "lupus cerebritis")
• Blood-count abnormalities: low white blood count (WBC) or red blood count (RBC), or platelet count on routine complete blood count testing)
• Immunologic disorder (abnormal immune tests include anti-DNA or anti-Sm [Smith] antibodies, falsely positive blood test for syphilis, anticardiolipin antibodies, lupus anticoagulant, or positive LE prep test)
• Antinuclear antibody (positive ANA antibody testing [antinuclear antibodies in the blood])

And most importantly-REMEMBER:

G_d grant me the serenity to accept the things I cannot change,
Strength to change the things I can,
AND....the Wisdom to hide the bodies of the doctors who said....
There's nothing wrong with you, it's all in your head!

MUCH LOVE!