Lupus?

[Bella79]

Ok, so a little over a year ago I broke out into hives that lasted for four months, I was diagnosed with Lupus because I also had extreme fatigue and excruciating pain in my hands. After 2 months I was told that it wasn't lupus but that it was probably Fybromyalgia even though my ANA came back positive. Since then I was told to stop taking the prednisone and plaquenil that they had originally prescribed me. Now, I have migraines all of the time, livedo reticularis, nausea, flank pain, intestinal pain, abdominal pain, chest pain, muscle weakness, extreme fatigue, hypopigmentation spots on my left arm, feet swelling, finger swelling, secondary raynaud's, malar rash, and darkening of my skin (like a light tan). I recently had a CT of my abdomen, ultrasound of my abdomen, urinalysis, MRI, all kinds of blood work, and a chest X-Ray. Everything came back normal except for a positive ANA, vitamin D deficiancy, a small lesion on the right side of my brain, and a slight Iron deficiancy. No one is giving me answers! Does anyone have any idea what this could be? Please help.

[CassParri]

Hello, a high ANA is from what I understand can mean rheumatoid arthritis, psoriatic, lupus, this is an alert that there is something going on with our autoimmune system... That is why I went to a specialist in the first place, to get a definite diagnosis as to what was wrong with me. They called on the phone and told me  my lupus results came back positive, but also told me that lupus sometimes comes back as a false positive, so they wanted more testing to be certain....I am devistated... The Meds they put me on are prednisone and methotrexate ...they are working on the pain and inflammation, however, they are also doing a number on me!!! I am a reck...feel horrible, upset stomach, anxiety through the roof, blood sugar stays elevated....oh yes, can't sleep!! Gotta be a better way!!!!!!

[lazydog]

The skin darkening sounds like possible Addison's disease.
The malar rash and positive ANA is usually indicative of Lupus.
Maybe you need to see another specialist?
...Julia

[DeeCee257]

Hi again,
So is the lesion on your brain new? What are the doctors saying they think it is and what caused it?  Can I ask how old you are?  With so many different symptoms it really sounds like a total immune problem somewhat like lupus.  I have had just about all the symptoms that you have had, except for the tan coloring of the skin and hypopigmentation. I even have the low vitamin D - treated with 50,000 units of Vitamin D once a month. Are you treating with an internist or a rheumatologist?
DeeCee257

[Bella79]

Thank you for the support. I should also mention that over the past 2-3 months my memory has gotten worse and at times it is very difficult for me to think straight. I feel like an elderly woman!

[DeeCee257]

A diagnosis of Lupus can be very elusive and take years.  It sure sounds like you have lot of the criteria. Do you see a Rheumatologist on a regular basis?  Your blood work may change over time so don't give up.  Your blood work can even change when you are having a flare and then revert back to semi-normal. It took me about 4 years to get a diagnosis.
Best of luck