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TaxiLady
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/29/2014 7:03 PM (GMT -6)   
Hi All:

I am new to this forum and am still going through testing for lupus (among other things). I have several symptoms of lupus, but all blood work is negative. I just had a small result for anticardiolipin, but so small it is considered normal. I have 5 of the criteria on the list, just none are blood work which seem to be the only requisite doctors want to see.

My question is actually about flares. I had a really bad day the other day and was wondering if it sounds like a "flare"?

On Wednesday, I slept in until noon (highly unusual for me). I got up stiff in the fingers and toes as usual with mild pain. I took it easy as I still didn't feel very well rested. By 3pm I was back in my room lying down. By 7pm I had extreme joint pain and swelling in my fingers, wrists, elbows, shoulders, ankles and toes. Now when I say extreme pain, I mean I could barely walk to the washroom and cried most of the night. High doses of naproxen did nothing to help. A friends came over, to bring me something and said I was swollen all over. The pain lasted until 3am Friday morning. I cried more than not the entire time. I was moaning out loud. When the pain alleviated enough, I fell asleep from exhaustion. I woke up tired, stiff and sore, but otherwise the same as I have everyday.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/29/2014 8:32 PM (GMT -6)   
It does sound like a flare to me.

I wouldn't give up. Try to find a new rheumy who will consider symptoms as well as bloodwork.
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! :))

TaxiLady
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/29/2014 8:35 PM (GMT -6)   
The funny thing is ... I have a neurologist (MS specialist) who is running my tests, not a rheumatologist.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/29/2014 10:21 PM (GMT -6)   
You need to see a rheumy. They are trained in diagnosing the tricky autoimmune diseases.
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! :))

TaxiLady
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/30/2014 7:33 AM (GMT -6)   
Thank you for your reply. I wasn't sure if this was something I should mention to my doctor.

I have so many questions. I hope you will try to answer them for me.

I ended up with a neurologist because I had to go to the emergency room due to exhaustion, depression and extreme pain. After examination, the neurologist said I had weakness and "neurological deficits" on my right side. He sent me for an MRI and my follow up with him was at the MS clinic. The MRI was clear, no lesions, so he sent me for blood work. I realized that part of the blood work was for Lupus. I started doing research and realized that a lot of what was described had been happening for years. In my early 20's I "burnt out" and did nothing but sleep for 2 weeks, I had joint pain in my hands and hips and I had blood/protein in my urine (I was on long term - 6 months - antibiotics for it). Over the years I have had numerous bouts of pneumonia and was put on prednisone for it. I still have blood/protein in my urine. Over the years everything was blamed on my hypothyroidism. When I began to lose cognitive function, I was tested for B12 deficiency. That was low. My MCV is high, which indicates pernicious anemia being the cause. My depression over the years has been so severe that I have been suicidal at times. Each of these things have been written off to something else or told they didn't know what was causing it.

Some of my newer symptoms include feet so cold that I get leg cramps and bladder incontinence.

Looking at the criteria, I have and have had 1) Malar Rash; 2) Oral ulcers; 3) Nonerosive Arthritis; 4) Persistent proteinuria > 0.5 grams per day or > than 3+ if quantitation not performed; and 5) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance. I now have "an abnormal serum level of IgG or IgM anticardiolipin antibodies" but it is not high enough to be considered positive.

I am afraid to push this without lab evidence and come out seeming like I am a hypochondriac. A majority of these symptoms are visible and I can't "fake" them. The swelling is obvious, even saw a rheumatologist for it. She said it was some kind of arthritis, but stopped there because my c-reactive, ana and RF were all normal.

Here are my questions:

1) How do I approach this subject without being dismissed?
2) Should I go get all my previous blood work to see if there was ever a positive ana? Would it be considered now?
3) I had a period of little to no symptoms, could this have been from the prednisone I have been on and off of over the years? Or maybe I was in remission?
4) My pain and swelling in my joints are worse at night. The rheumatologist said that it wasn't a rheumatology thing because I would be worse in the morning. I am stiff and sore in the morning. As I get moving things get better, but by late afternoon/early evening the swelling is at full force and by the time I go to bed at 9pm, the pain is bad. Has anyone else this happen?

Sorry this is so long...sooo many questions.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/30/2014 6:48 PM (GMT -6)   
I would gather up all blood work reports and photographs of visible symptoms. I would then find a different rheumy and bring them to him/her. Then ask what is this?

If they shrug you off find another doctor.

I hope you can get an answer soon.
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! :))
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