Advice please.

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JASx2
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/22/2013 8:51 PM (GMT -6)   
My PCP says it's Lupus. My Rheummy says "There's swelling, we can't help and good luck."
I tested positive for the Lupus Anti-coagulant test back in Jan 2012. The R.A. Spec said Lupus and APS. Then 3months later it was retested and found negative. Both the Lupus and APS were pulled off the table as diagnosis.

My CRP levels as of three weeks ago was 10.2mg/dL the test before that was 11.1 mg/dL and the one back in March 2012 was a 9.8mg/dL and the one back in January was a 10.4mg/dL

My symptoms line up which is why my PCP is pushing the diagnosis. I've had 3 miscarriages out of 4 pregnancies. 1 which left me in the hospital for weeks. I have equal swelling and inflammation in my hands and feet on both side. As well as inflammation in my chest wall and in my spine. I live with UTIs and yeast infections. I'm on a daily diet of Diclofenac, phenegran, aleve, and ultram just to keep the symptoms from progressing. At 170lbs my wedding ring (size 10) is now to small for me. I got it size in December.

I'm on the "Clean diet" and I'm vegan. No gluten, no GMOs, no dairy (allergy), very little soy. I've been eating like this for 5-6 years now.

Is there anything outside of blood work and x-rays that I can use to prove or disprove Lupus? It seems my current rheummy isn't going to accept any arthritis or auto-immune disorder until it shows in the blood work. I'm getting ready to move cities, and I fear loosing my PCP because he's really be fighting this fight with me. However, I'm looking forward to a new Rheummy.

I've been dealing with chronic pain, inflammation, weakness, and stiffness for years upon years. Last Tuesday when I got up to get my son ready for school. Just sitting up on the end of my bed and placing my feet to the floor felt like I had hiked a mountain. It took me 40minutes just to run in an grab a smoothie and some fresh fruit from my local grocery that day. It hurt so bad to walk and I was just moving so slowly.

I'm tired and exhausted. I just want them to figure out what's wrong so I can begin with the next step. And short from the fact that my CRP is so high and the swelling is so obvious that I have strangers commenting. Most of the specialists I have seen are trying their best to say it's all in my head.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/22/2013 10:44 PM (GMT -6)   
You need to see a better rheumotologist. One way to find one who is actually well-versed in Lupus and other auto-immune disorders is to visit www.lupus.org. Look for the local chapter in your area, then talk to them and see which rheumies are on their advisory board. These are the Drs that are interested in helping patients with these illnesses.

Lupus is NOT diagnosed by blood tests. It is a tricky illness that does not have any one single defining factor, that is why it is so hard to diagnose. Even if a rheumy is not sure it's lupus, they often try a treatment and can learn more about what disease you do have by the reaction you have. Most Drs know that the newest literature says to diagnose lupus by checking to see if the patient has any 4 of the 11 symptoms of Lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

I hope your next Dr has more sense about him/her!
Lynnwood, Lupus & Sjogren's Moderator
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 5/22/2013 11:43 PM (GMT -6)   
I agree you do need to see a new rhuemy.
I hope your new doctors will work together for an answer.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

JASx2
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/23/2013 1:04 AM (GMT -6)   
Thank you so much for your answer. I think that's why my PCP is pushing Lupus and my official diagnosis. I have 8 of those 11.
I don't have the serositis, but I do have Costochondritis which is highly annoying cause it mimics the feeling of a heart attack. I've ended up in the E.R. several times because of it. My PCP says to not take it lightly because of my CRP levels. even though my cholesterol and triglycerides are in really healthy levels.

I will contact my local chapter tomorrow.
I hope my new rhuemy has sense about them too, but I will greatly miss my PCP.
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