New here- just got positive ANA and others

Hi there-

Thank you all for sharing your experience and struggles and hope on here.

The rheumatologist is getting closer to a diagnosis, and I'm wondering if anyone would be willing to share their stories with me? When were you diagnosed? What has your outlook been like?

I tested positive for ANA and Ana Hep 2 and Centromere antibodies. So those things seem to point to either Lupus or Scleroderma.

I don't know much about either except for the many articles I've read... All I know is that life is going to change, but I don't know how...

I've had a low grade fever for 6 months, joint pain, muscle pain, sharp abdominal pain, fatigue, and you know, a ton of other unpleasant and/or painful symptoms.

I guess just any help or stories you can offer that would help me to not feel alone would be great... And to help the reality of this settle in...

I was diagnosed just over 20 years ago, I was having extreme abdominal pain, joint pain, major fatigue for a person my age, etc. I ended up having a major bleed and had to have a colon resection, at which time the tissue was tested, many, many blood test and nuclear med tests were done and finally after many months I was diagnosed with SLE and possible Crohns. Since my son was diagnosed with SLE and RA at age 19 (he's now 26), now my daughter age 28 is showing the same signs and has been undergoing testing for the last few years. She has another follow up with our Rheumy soon for additional testing. What I guess I'm saying is there are 3 of us, same Doctor all have had signs of lupus, but all different, sometimes we are diagnosed within months others years. Lupus is a very difficult and frustrating disease to pinpoint. Our Doctor is awesome though, he does not like to "label" a person unless he's absolutely sure, which I totally respect. Lupus is not diagnosed merely from a positive or negative ANA, which I'm sure you've already read, it is based on a persons symptoms.

I wish you the best in your journey to finding out the cause of your pain.

Gentle Hugs,
Melissa

Dx in 2002 after 2-3 years of increasing fatigue, where I could sleep 18 hours and still be exhausted. PCP did an ANA, suggested it might be Lupus or something similar, and sent me to what turned out to be a fantastic rheumy.

Rheumy took note of my symptoms, prescribed Plaquenil, Prednisone, and later Imuran, then Cellcept as things continued to get worse. Neuro-psych testing said my cognitive dysfunction was so bad I'd lost 20 IQ points. Lots of random joint and muscle pains. Couldn't follow a 20 minute sitcom, or remember where I was well enough to drive safety. Slept away 4-6 years, maybe more. Lost my career, my friends, my interests, couldn't hardly call it life.

Cellcept was totally a MIRACLE drug for me, after 18 months on it I was headed into a "quiet phase". (They don't say remission with Lupus or other auto-immune diseases.) Eventually I was able to come off all medications, even Plaquenil!!! (Highly unusual to come off Plaquenil.)

I was very weak at that point, but have been able to work back up to a reasonable level of fitness. Most of my brain is functional again, but I don't learn as quickly or as easily as previously. I won't ever be the marathon runner or PhD level researcher/engineer I used to be, but life is good.

Lupus can be a difficult disease, and every case is different. If you don't believe your Dr is working with you to improve your situation, there is no stigma in finding another Dr. I've known people who've gotten progressively worse, people who hold steady for a long time, people who've gotten better quickly, and people who get worse then better. No two patients are ever the same.

Let us know if you have any specific questions we can help you with!