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Discussion Starter · #1 ·
I've been seeing the same rheumy since January 2007, and she is honestly driving me bonkers at this point. For the quick version, at one appointment she tells me I have UCTD and at the next it is lupus. Just when I'm feeling comfortable with that, I suddenly am back to UCTD. She has done it to me once again, having backpedaled from lupus today in spite of a positive anti-dsDNA in January 2008, multiple positive ANAs and symptoms galore, including fevers, rashes, mouth sores and joint problems. AAAAUUUUGGGHHH!!!! :mad:

I'm going to see my GP, whom I respect greatly. I'm hoping he can get me in to see the one rheumatologist in Jacksonville who specializes in autoimmune diseases. She has an 18-month waiting list, but I hope my GP can pull some strings.

It's just so frustrating to feel as if your rheumy cannot remember you from one visit to the next, and only relies on the top sheet inside your medical jacket to determine what is going on.

Thanks...I needed to vent!
 

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Discussion Starter · #9 ·
Thank you everyone for the supportive replies.

Yes, Lily, my meds stayed exactly the same this time, even though I am still getting the rashes on my legs that made her start the low dose MTX. I expected she would increase the dose. Nope! When I saw her in April, she said she would order biopsies if the MTX didn't do the trick. That didn't happen,either.

I don't know why she started in on UCTD again. I honestly think she is using the most recent set of labs without looking at the big picture over time. Apparently, the anti-dsDNA was negative in April's blood work. I'm going to order a copy of my entire file from the rheumy's office.

Anyway, I see my GP on Wednesday. At this point I am willing to let him watch over me for 18 months while waiting for the other rheumy. I trust his judgment completely.

Terri
 

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Discussion Starter · #12 ·
Hello again!

I saw my GP on Wednesday last week, and he was very sensible about the whole thing. We've discussed my concerns about the rheumy before, but he did NOT want me to be without specialized care for 18 months in the interim. So, he gave me a referral for continuing care with the current rheumy, as well as a second opinion with the other rheumy. (Technically, it will be a third opinion! :lol:) At the very least, I will have stable treatment until I get the second opinion. Also, he said he would do the biopsies on short notice. He prefers the rash to be active first. Since stress is the trigger, I never quite know when it will show up.

When I came home from work today, I had a message to call the insurance company. They are personally making the appointment with the new rheumy so I get in faster. I'll find out more tomorrow, but it sounds promising.

Joan, I appreciate your words - you always seem to get to the crux of the matter! I don't normally miss an opportunity to speak up, but the rheumy never gave me a chance this time. She was nearly 40 minutes late for my appointment time, and made it obvious she more interested in getting to the next room than to the bottom of my diagnosis.

Terri
 
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