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

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Queen_Ghost
New Member


Date Joined Apr 2014
Total Posts : 16
   Posted 4/30/2014 1:24 PM (GMT -6)   
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
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/30/2014 3:56 PM (GMT -6)   
I have found the best Lupus drs by looking at www.lupus.org, locating the closest local chapter, and seeing what local Drs are participating -- these are the rheumies that are really interested in lupus and know how slippery it is to diagnose and treat. If your Dr is not active with your local Lupus group, you may want to get a second opinion.

However, that said, it's fine to follow along with your current rheumy. Take what he suggests and report all changes, for the better, for the worse, and even if nothing changes. Keep a list of current (last 5 days) symptoms and present it at every visit. Review/redo the list the day of your appt. Sometimes it sorta' looks like Lupus but is really a different auto-immune disease or even something like fibro. Lupus is very difficult to diagnose, and Drs learn as much by see what meds it DOES NOT respond to as they learn by seeing what it DOES respond to. Let him be the Dr, don't try to play one on TV. (I mean, let him decide the dx, don't offer him one to prove/disprove. Drs need to use their brains in a certain way to get to the truth, if we fog the situation with our thoughts sometimes their investigation can go astray.)


Here is a good article on lupus vs fibro www.myalgia.com/lupus.htm. Also check out the article on what ANA means in the Lupus Resources thread at the top of the forum.

Best wishes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Queen_Ghost
New Member


Date Joined Apr 2014
Total Posts : 16
   Posted 4/30/2014 4:01 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.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/30/2014 4:18 PM (GMT -6)   
Check out "The Lupus Book" by Dr Daniel Wallace. Also known as "the lupus bible", it helps clear up a lot of these questions.

It seems many of us have sun allergies or over reactions to the sun. No harm in trying sunscreen to see if it helps. It will give Dr more clues - yes/no/maybe!

Many with Lupus are allergic to sulfa meds (I get little red spots all over!).

Both sun allergies and sulfa med reactions can occur by themselves, they are not necessarily indicative by themselves of any other disease.

If you want to keep visiting this Rheumy - try what he suggests and report back to him. That's the only way to make progress toward symptom abatement - which, with auto-immune diseases, is far more important than a specific diagnosis. Otherwise you're wasting his & your time. He works the way he works.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/30/2014 5:34 PM (GMT -6)   
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.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Queen_Ghost
New Member


Date Joined Apr 2014
Total Posts : 16
   Posted 4/30/2014 5:57 PM (GMT -6)   
Lynnwood said...

If you want to keep visiting this Rheumy - try what he suggests and report back to him. That's the only way to make progress toward symptom abatement - which, with auto-immune diseases, is far more important than a specific diagnosis. Otherwise you're wasting his & your time. He works the way he works.


I suppose I'll take anyone's help rather than no-one's, but my primary suspected organ involvement (trouble breathing, chest tightness, back pain, abdominal pain, ribcage swelling, frequent urination, material in urine) and she sent me to him specifically for xrays, ultrasound, and treatment for lupus. I feel like, regardless of his difference in opinion on the SLE, he should have at least done those diagnostics to rule out organ involvement. That's not just a waste of my time, that's putting my life in danger.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/30/2014 7:36 PM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Queen_Ghost
New Member


Date Joined Apr 2014
Total Posts : 16
   Posted 4/30/2014 8:17 PM (GMT -6)   
Barbara Lee said...
br />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.



Barbara, thanks for your response! I've been keeping a very detailed log of all my symptoms for a while now. I even took a video during my last "episode", with huge swollen feet, net rash, and bright red dots all over. Plus the butterfly race and facial swelling. He barely even reacted to it.

He at least ordered a urinalysis today, because I've been having frequent urination for a while now (with protein found on last urinalysis). Good thing, too, because my sample was "sweet tea" colored with a lot of brown solids in it. Sigh.

I know it could be RA. It could be lupus. I just wish he wouldn't have dismissed lupus based solely on the negative double strand, since that is known to be inconclusive. I think he just wanted me out of there so they could close, since he worked me in as an emergency referral.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/30/2014 9:23 PM (GMT -6)   
I go to a kidney doctor for my kidneys because my rheumy doesn't treat kidney involvement.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 5/1/2014 10:03 AM (GMT -6)   
See another rheumy. If you don't have lupus something is certainly going on...possibly an overlap syndrome with lupus included. As others have noted lupus can be difficult to diagnose and everyone presents differently. It can also present as part of an overlap with other AI diseases which make it even more complicated. Whatever you have it is attacking your kidneys.

Make sure you write all your symptoms out and give it to the doctor. Diagnosis of lupus or any other autoimmune disease is made with a combination of clinical symptoms and labs...and sometimes the labs don't confirm until later on.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 5/3/2014 9:57 PM (GMT -6)   
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!
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