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Posted By : kayva61014 - 6/7/2017 12:53 PM
Today I had an appointment with a perinatologist for a preconception appointment because my husband and I are deciding to have another baby or not.

It was a long, drawn out appointment. He had all my internist notes, rheumatologist notes, labs from the last year etc. He was very thorough.

He pretty much said his medical opinion is I DONT have Lupus or a very MILD case of Lupus. He said he's taken care of pregnant women with Lupus and he said their labs and physical state are a lot worse than mine. He said he isn't a Rheumatologist and he will respect my rheumatologist opinion and treat me as he would any other Lupus patient in pregnancy but he is personally questioning my diagnoses.

I'm questioning it too! I've been hurting all week and I had labs drawn Monday and everything is perfect. My inflammatory labs are the lowest they've been in a year... yet I'm still hurting.

I'm getting so frustrated. I don't want bad labs at all. I'm happy they're good but it's also frustrating because then you're not sure why you're in pain.

I suffer from body pain, fatigue, muscle twitches, oral ulcers and rashes.

I see my rheumatologist next month. I'll always discuss with him his opinion but I don't look as bad as I feel on paper.

Posted By : Lisabeans - 6/8/2017 7:36 AM
I understand completely how you feel. I am still undiagnosed for over 2.5 years. My primary says it is SLE but my rheumotologist is now leaning towards RA. However except for a low positive ANA, all my blood work has been fine. Although I live with daily pain and burning pain throughout my body, swelling of my hands and feet, mouth ulcers, losing hair and sensitivity to sun and light. It is a long drawn out battle and most ai issues are not diagnosed with blood work.

Sorry I can't help you but hope your rheumatologist can shed some light for you.
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Posted By : straydog - 6/8/2017 8:44 AM
You may want to get copies of all of your testing & get a second opinion with another rheummie. It can be difficult getting a dx, however, when there is conflict I would go with another opinion.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Melissa D. - 6/10/2017 9:56 AM
Are you on medication to treat lupus? If so, your labs should come back normal that means your medication is doing it's job and your disease is under control if you do have lupus.
Lupus SLE 1996, Sjogrens, Raynauds. My worst nightmare was imagined when my son was diagnosed with RA and Lupus NPSLE at 19.

Posted By : Lynnwood - 6/11/2017 8:11 PM
Just because your labs are normal, or close to normal, that does NOT mean you don't have Lupus. This is a mistake Drs who are NOT rheumatologists and are NOT experts on Lupus tend to make. Lupus is diagnosed BY SYMPTOMS.

I can't stress this enough. Anyone who wants to question your diagnosis because of labs doesn't know what they are talking about.

And because your labs are normal, that doesn't mean your disease is "under control" either!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

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