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Post by mez on Mon Jul 20, 2009 7:48 am

Hi everyone. After reading the posts on here i am grateful there is such a place come to for advice and support. Thank you in advance.
I was diagnosed with Lupus about 2 years ago after seeing a specialist for a bad rash on my knuckle joints, sore joints and chronic fatigue. After tests, I was prescribed sterioids and antil malarial medication which i refused to take instead opting for a second opinion from my natropath.
I have been taking high doses of Omega 3 fish oil which has helped my joints and some other concoction of herbs (Yuck)!!!
My rash went away for summer but since winter has returned so has the rash, the fatigue and joint pain.I went back to the specialist seeing a different doctor, as you do in hospital clinics, who now says i have chilblains not lupus. I am so confused and also convinced that i have lupus after reading many peoples symptoms which are so similar to mine. Does anyone else have rashes that start off with small watery blisters which are not itchy at all but terribly sore to touch, spreading across my finger joints. I have them no where else though. I have trouble sleeping, terrible fatigue, joint pain, headaches, light sensitivity etc etc................My chest xrays were clear and there were no ANA in my blood results. Is lupus always diagnosed by blood test results alone or can you have clear blood results and still have lupus?
I would appreciate any advice anyone could offer.


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Post by christines555 on Tue Jul 21, 2009 6:20 am

Hi Mez,

Welcome to the boards!! Glad you could join us. cheers

Who diagnosed you with lupus? Usually it is diagnosed by a rheumatologist but not always. Lupus sometimes mimics other diseases and other diseases sometimes mimic lupus. It is very difficult to diagnose since we all have different symptoms. Anyway here is a list of criteria that rheumatologists use to diagnose lupus:

To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have 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)

People with lupus also may experience symptoms that do not appear among the ACR criteria:

  • fever (over 100° F)
  • extreme fatigue
  • hair loss
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)

Since you now have two different diagnoses, you may want to see a rheumatologist and, yes, you can have lupus with a negative ANA. Hope this helps some. Very Happy


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Post by Poppy on Tue Jul 21, 2009 5:37 pm

Hi Mez:

Hello and Welcome! Chris has given you some great info to think about.

I do get the little water blister like rashes on my hands, too. Mine itch, though. They can drive you crazy for a while but they are gone in a day or two.

Hope you get some answers soon and keep us posted on how you are doing. Smile


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