Comment by Jen on July 15, 2013 at 3:49am

Did the test come back?

Comment by Vane on July 15, 2013 at 12:30pm

Yes. Turns out it is lupus and/or sjogrens syndrome.

Comment by Jen on July 15, 2013 at 6:32pm

What symptoms did you have?

Comment by Vane on July 15, 2013 at 6:35pm

Well some blood tests were abnormal and i started experiencing dry eyes and dry mouth. That along with the hair loss.

Comment by Jen on July 15, 2013 at 8:23pm

Ok cause I tried pushing for the test to see if they can notice anything with lupus and they felt it wasn't needed so they just did some random blood test and notice I was vitamin d deficient

Comment by Ashle on October 6, 2013 at 4:03pm

I was recently diagnosed with lupus after experiencing about 3 months of patchy hair loss. Heidi- I was informed that on my ANA blood test that my Anti-Ro antibody came back as 7.4 (it should be 0.0 - 0.5). The anti-Ro antibody is present in many people with cutaneous (skin) lupus.

I also experience, besides my alopecia areata, extreme fatigue, nose ulcers (yay!) aches and pains pretty much throughout my body, super heartburn (which apparently is very common for people with lupus) and photosensitivity (e.g. skin rash on chest and upper arms when exposed to too much sun, hair loss when exposed to sun, and I am extremely sensitive to florescent office lights because of the UV-B rays that emit from them). The photosensitivity, either to the sun or florescent lights, is my main trigger.

I however do not have Sjogrens syndrome.

My GP has referred me to Rheumatology. Now I am just waiting to see them. However, the good news with lupus is that once your 'flare ups' subside, you hair usually begins to grow back. Flare ups usually last around 3-4 months. I am in my 4th month now and have regrowth in almost all my patches (its white fluff with a bit of brown). However, I also experienced the ophasis hair loss pattern in addition to the patchy hair loss, and unfortunately I haven't been lucky enough to have regrowth there. I've heard it's rather hard to get regrowth in those areas though.

Comment by Ashle on October 6, 2013 at 4:05pm

Oh! I also experience blue fingertips/nail beds when it somewhat cold out. Anything under 50 degrees and I've got a new nail polish color.

Comment by Andrea on October 7, 2013 at 8:59am

Oh darn, I thought I was editing a comment and deleted it :(

I have probably had low grade symptoms all my life, but I wasn't diagnosed until I was 38, only 108 lbs (at 5'9") and lost 95% of my hair.

I was born with psoriasis, but just always treated it as dandruff from hell. At 17, after a tonsillectomy, I started experiencing the blue nails Ashle spoke of. That's called "Reynaud's Syndrome" and can be a stand alone auto immune disease or a symptom of a greater one. At 22, I became extremely photosenstive and would develop severe hives after anything more than incidental sun exposure.

Then at 32, I was involved in a massive car crash (jaws of life kind of stuff). The trauma from that amped up symptoms, but nothing really out of control. I had constant pain, even in places that sustained no injury, particularly hands and feet. It was then that my mother suspected that I had RA (which I also have).

Four years ago, at 38, I became horribly ill after another trauma. I lost 18 lbs in 3 weeks, resulting in that 108 lbs, and over the course of 9 months lost all function in my hands, and my feet were so painful that I couldn't walk. Even clicking the mouse sent pain up my arm. Ultimately, it was my mother (who is a physician) who diagnosed me as Lupus, but she took me to a rheumatologist, told him my symptoms and he made the official diagnosis.

Good thing she took me...my mind wasn't working right. Since then, I have visual migraine and dizziness frequently. I also got a UTI which I'd never had in my life. And because everything hurt so badly I didn't even realize I was getting it until it was in my kidneys, which is very dangerous for a Lupus patient.

Comment by Ashle on October 8, 2013 at 7:35am

I've had frequent UTI (between 2-5 a year) since I was 15. I was given antibiotics to take almost every day for a year at one point because it was so frequent. Fortunately, in the last year or so it's only happened once.
My GP checked my kidney functions after they did my ANA blood test - but everything came out fine.

Comment