Is my rheumy crazy or is it me?

Yesterday I had an appt with my rheumy. He's the one who dx me in October with lupus. But my neurologist had spoken with him recently and told me that the rheumy said he didn't think I had lupus!

So I asked him...do I have lupus? He says no, he doesn't think it's lupus....it's something similar to lupus but not lupus. I said what is it, some other CTD? He just said it's "autoimmune", whatever it is.

The problem is I was the last patient of the day and he wanted to get out of there because it was after 5 o'clock. So that was all he said.

I guess it's a good thing to NOT have lupus, but why is he saying this and what is it then?

If it walks like a duck, and quacks like a duck, is it a duck? or something else????

Has anyone else had problems with diagnosis like this??

JoAnn

Thanks Lynnwood....yes, I'm still on plaquenil and prednisone and Imuran so I guess that's what's important.

I'm not trying to apply for SSDI yet, but that may happen in the fairly near future if I don't start feeling better now that I'm being treated for Lyme disease.

Oh well, I do have LOTS of other diagnoses! LOL!

Hi Lucy,

Wow, that's a very positive ANA you've got, even after a year on Plaq! I'm surprised that your rheumy is saying it could just be fibro!

My rheumy is also very quick to blame fibro for symptoms too....he is a fibro specialist so maybe there's a bias there?? :)

I know he runs a fibro research clinic out of UCLA.

Oh well....it sounds like I'm not alone!

Take care,
JoAnn

Thanks for relating your experiences Judy. That's part of my problem too....my "positive" ANAs haven't been positive enough, just at the indeterminant or equivocal level.

I guess I could try for a second opinion...but I'm just so tired of doctors right now! :)

(((hugs)))
JoAnn

Thanks redrose! I probably will get a second opinion at some point.

I'm actually on my third rheumy right now! :)

The first guy dx me with fibro, but told me flat out I don't have RA or lupus. The second agreed that I had fibro, but also gave me a dx of RA because of xray evidence (I'm seronegative for RA)...and also told me I don't have lupus. My current rheumy agrees that I have fibro and RA, but told me in October that I ALSO have SLE. And is now backing away from that diagnosis. (???!!!???)

So do I need a fourth opinion? Possibly.

As I've been thinking about this mess, I've realized there's always the possibility that some of my AI diseases will go into remission as my Lyme disease is treated.

I've been absolutely flabbergasted by some of the stuff I'm learning about Lyme disease! Before my dx, I had no idea it was so sneaky, that it could both trigger AND mimic AI disease and fibro, and that it's reached epidemic proportions in the US.

I should share this video with all of you just as a FYI, because absolutely everyone should know this stuff about Lyme disease (how easy it is to catch nowadays and what it can do to a person):

www.youtube.com/watch?v=4ALgOikmjCw

This video is absolutely frightening....and true. Please pass it on, especially to people with kids. Every parent should watch it.