Anyone Have Lupus?

Okay, I am trying not to freak out at the moment. I had a baby 3 months ago and had some health problems following, turns out I have an underactive thyroid. That's fine, it's being treated. But I also told the doctor that I had begun to feel very achy, particularly when I wake up in the morning. It's so bad, I have trouble walking. She ran some blood tests, mainly looking for rheumotoid arthritis. I do not have that, however I did screen positive for Lupus with a blood test of 1 in 160. I was told 1 in 40 is normal.

So I am really scared. They told me not to worry too much, the numbers may be off due to my thryoid problem, but I should make an appt. to see a rheumotologist. I have a couple doctor's names, Dr. Lipstein in Lake Success and Dr. Mund in New Hyde Park.

Does anyone else have this? I have heard nothing good or reassuring about this illness, though I have not researched it carefully. I am scared--really worried I will be unable to care for my baby at some point.

TIA for any infromation, websites, doctor referrals (I am in Nassau), or hugs.

Re: Anyone Have Lupus?

I have a friend who has Lupus. She has active times where she needs to take it easy and most of the time she lives a very active and full life.

I'm sure it's not a walk in the park, but she has had very few problems.

Re: Anyone Have Lupus?

I had a positive test for Lupus but the follow up tests came back negative. It's common for women to get false positives (so says my doctor)

I have my fingers crossed for you!

Re: Anyone Have Lupus?

A friend of ours has Lupus.
This is her website:

ButYouDontLookSick.com

Re: Anyone Have Lupus?

Thank you for the information and the website! It will be useful if I do have Lupus.

I know I shouldn't get too upset yet. The test may have been a false positive, and even if I have it, it may be in the early stages. But I keep thinking of this woman I worked with who had lupus. She was sick all the time, and finally had to leave her job because of the disease. Though I know that doesn't mean I'll be the same, I keep thiinking of her.

Thank you for the good thoughts--I need to think positive!

Re: Anyone Have Lupus?

Re: Anyone Have Lupus?

FH's mom has lupus. She's had it for 10 years now, and 360 days of the year, you'd never even know it.

Re: Anyone Have Lupus?

Sounds like you camr back with a +ANA. 1:160 Sounds like a high number but it really isn't. Most women with Lupus are in the 1,000's or even higher. Also just because you have a +ANA it does not mean you have Lupus. It just means you have an antibody that is not supposed to be there.
My ANA ranges from 1:80 to 1:160. I DON'T have Lupus. I have undiferentiated connective tissue disorder. Basically they don't know what I have so they gave me this label. I have 2 diff antibodies I shouldn't have.
I was told that labor puts a lot of stress on the body so you can have an autoimmune flare after giving birth. I have to go back tp Rheunmatology next month to get my levels checked. At tht point baby will be 3 months and if I have any issues it will present by then.
I have had all the testing and have seen all the specialists. It is scary at times but you will get through this. If it is Lupus they will be able to give you meds to control the flares. good luck

Re: Anyone Have Lupus?

I have not yet been diagnosed with lupus, but my doc is concerned it may be, although I'm anti-symptomatic for the most part. My blood work just comes back very funky. I have to see a rheumatologist on 4/21.

My thoughts are with you! The scariest part is not knowing what's going on.