IChecking in with tons of questions

[Guest guest]

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle

damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi