Camama, good luck with your new rheumatologist. I understand completely where you're at with the Lupus idea. I also feel a little ridiculous at times even suggesting it to my rheumatologist, but from what I've read it is not out of the realm of possibility. If you have had a strong positive response to the plaquenil, that is something the rheumatologist can use.
People with lupus often don't have the classic symptoms (i.e., butterfly rash). In fact, many people are diagnosed with lupus incidentally. They had a problem with their kidneys, or lungs, and then they were dx with lupus. Also, if you have the beginnings of mctd, you will probably never test positive for the specific antibodies in SLE, but will eventually test positive for the antibodies unique to mctd (I believe it's anti-rnp). My mother did not test positive for anything but a positive rf for years, but she was eventually diagnosed with SLE, and then MCTD. She only had a butterfly rash one time the entire time she was sick (25+ years).
I guess my point is, try not to beat yourself up about being a hypochondriac. I'm sure you're not, and your new rheumatologist will see that. Lupus is a very difficult disease to dx, and often takes many many years. Plus, even if a doctor suspects it, they're not going to say anything unless they're 100% positive. I have a friend who also falls into this category--she has had the joint pains for years, and weird enough bloodwork that her rheumy believes she could develop SLE, but has not so far (she's in her 50's now). She has been on plaquenil for 10+ years, and would never even think of going off of it. Her rheumy tells her that has Undifferentiated Connective Tissue Disease (UCTD). Personally, I think that's where I fall as well.
In any case, I'll be thinking of you and I pray that you get the answers you need from your new rheumatologist.
Hi there, appointment went well. Never brought up the eyes, we did discuss my history, he listened. He, obviously DID his homework - he knew a lot of my answers already, was well informed of my chart (which was there in FULL - so I don't know what the last guy meant when he said he 'tossed' my file and came in with 3 papers in a folder!)
He explained WHY Enbrel is a better choice than Humeria for me and WHY I may not have the reaction I had with Remicade. Still, I choose to wait until I feel more health stable. He was okay with that, but talked as if I AM going to start it soon. We'll see.
I asked about Lupus and he asked me a few questions and answered, 'it could be possible' conisidering my ANA has often been positive and my answers - I have a lab slip to get updated tests taken including an ANA test. He said that if the ANA comes out positive, then they do a whole slew of tests. If it comes back negative, then they stop right there and figure I don't have it. Well, I'll take that. He said, "it really doesn't matter what we call your condition because the treatments are all the same however, i do agree w/the fact lupus adds other factors in your appointments that we have to look for and we should try and rule it out..." So, he won my vote for now.
I don't think he has many patients yet, so I think this is a good thing for me. Hopefully, that will put me in his head long term after he starts getting busier. (I think he may just be out of schooling, residency, and such - I could be wrong, but he seemed VERY young.)
Thanks for all your support! You guys are awesome!**
yea mama! you know sometimes it's best to be seen by "fresh meat". their minds aren't jaded yet, they're up on the newest & latest stuff, and are really looking to please.
stick with this kid!
when will you start Enbrel?
erin VIEW IMAGE
I'm still not 100% I will EVER feel secure enough to try Enbrel...but, you can never say never.....I would just like to be able to go longer than I have w/o getting sick. My illnessess so far (knock on wood) have been getting better (not as severe) - so, we'll see.. . . at least I'm heading in the right direction.
We didn't talk much about my liver...however, he made a point to say he was going to check it on the lab slip.
I hope he continues to be a good doctor.. . I have had docs before who seem great the first or 2nd time, then blamo - they can't help you, they want nothing to do with you.
I hope everyone is doing well today. We've had some funky weather and I'm feelin' it!