Hello everyone. I usually posts on some of the other health boards but I thought someone here might be able to help.
I have had on and off flares for the last 9 years. Sadly though no doctor can seem to pinpoint what is wrong. I am confused now on which doctor to turn to. I am bouncing back from rheumie to neuro. I have been on steroids in the past and they help greatly. Here is my question. When lupus is or was suspected when do you let go of the assumption that it could be lupus. I have had only one weakly positive ANA over the last nine years. Just a month ago I had all of these tests ran.
Complement C4 Serum
Antinuclear Antibodies direct
Anti-DNA (DS) Ab Qn
Antiparietal Cell Antibody
RNP Antibodies
Smith Antibodies
Anticardiolipin (came back weakly positive once, ran again and negative)
Protein (serum)
ANA
SED rate
All of these tests have come back in normal range. Yet I still have symptoms. I know you are not medical doctors but I know that people dealing with this disease are very knowledgable. It was suspected at one point that I had MS but now that I am experiencing Raynauds and some joint pain my current neuro doesn't think that anymore.
In anyones opinion, do you think I should feel comfortable saying not Lupus by this extensive workup? I have extreme anxiety from all of this worrying and I would just like some opinions.
Thank you so much for your help.
By the way, I am now taking some anxiety meds and starting to see a therapist this week to help me deal with this not knowing what is wrong with me.
Dear Debbie, Welcome! That's a good question ( = when to let go of the possibility that you may have lupus). At least you have a sense you fall in the arena of rheumatology, so it's good to have at least that focus.
I'm certainly no doctor, but I wonder if (1) all relevant tests were performed (e.g., anti-Ro & anti-La don't seem to appear on your list); and (2) were all tests done at a "good time", meaning when the odds were high for trapping something useful?
Here's one concrete thought: "Blessed4Life" recently posted on ANA-negative lupus; and on the mysteries and vagaries of ANA, the "4 of 11" criteria, etc. You may want to check that thread out.
An aside: I was ANA-negative but *Ro-positive*. It took years either for Ro to go positive (or maybe just for some dr. to atucally test for it?). That would make me either, depending on your terminology preferences, "Ro-lupus" or "subacute cutaneous LE" subset of SLE (which is abbreviated SCLE).
A couple more concrete thoughts: (1) was RF (rheumatoid factor) tested? I think it can be positive in RA, in lupus, & in "rhupus" = a crossover syndrome. (2) Have you ever had *other* symptoms that are readily testable? I'm thinking things like SKIN RASHES here. (3) Have you checked out the three "sticky posts" at the front of this board, on lupus diagnostic criteria (the formal definition & also alternative criteria), plus also antiphospholipid syndrome?
It was suspected at one point that I had MS but now that I am experiencing Raynauds and some joint pain my current neuro doesn't think that anymore.
In anyones opinion, do you think I should feel comfortable saying not Lupus by this extensive workup? I have extreme anxiety from all of this worrying and I would just like some opinions.
Hi Debbie,
I was diagnosed wiith MS five years ago. Last year I was also diagnosed with Raynaud's and the Malar Rash, but of course now everyone thinks is Rosacea. I also have a lot of joint pain now. I've heard that it is possible to have both MS and Lupus, but it is very rare. Unfortunately, both diseases can take years to diagnose because they are so similar to each other. Do you have any rashes that you get after being in the sun? I had a weakly positive ANA test last year, and my doctor just said that was from the Raynaud's. Anyway, I know it can be very stressful not knowing what is going on with your body and even more streesful when doctors don't know either. It can be a long road to a diagnosis, but don't get discouraged. If you don't feel any doctors are helping or aren't at least treating your symptoms, fire them and find one that does. That's what I did. Good luck.
Thank you for your replies. I am sorry I haven't gotten back soon. I have been riding an emotional roller coaster that just keeps going round and round. When I get more energy I will dig up some of the other tests that I have had done.
I do have an appt with a new rheumie since I canned my last one. It is not until November though. It is at a teaching hosp. so hopefully they can help me out.
