Hi, I want to give some background. I am 34 yo female. I was diagnosed with vitiligo (another autoimmune disease) when I was 10yo but it was treated with creams and I responded very well. In my 20's I would get numerous rashes and also had extreme joint and muscle pain to the point I couldn't lift my arms when I got up in the morning. I was tested several times for Lupus (I think they just did ESR and ANA tests--both negative). Through the years I have noticed times where the pain was bad and other times where none at all. I have an aunt who died years ago from Lupus on my Dad's side. Flash forward...I got pregnant a couple of years ago thanks to fertility treatment. While pregnant I developed preeclampsia and had elevated LFT's throughout the remainder of pregnancy. After having my son, my LFT's returned to normal. I began having the joint pain again though this time mainly in my fingers and wrists (very severe in the mornings) and also began to have extremely dry mouth (my tongue would stick to the side of my mouth during the night). I was also having extreme vaginal dryness where I seriously could not have sex with my poor husband because it hurt so much. Slowly that has improved. I have also had on and off again right upper quandrant pain and back pain. Last week I felt a small lump near my right ribcage. I finally went to the doctor. My LFT's were elevated 2x normal, ultrasound revealed slightly enlarged liver and spleen (with some fatty deposits on liver), and an AMA of 1:2560 (my doctor said the highest he has ever seen). From what I read the AMA points to primary biliary cirrhosis which appears that it often times is diagnosed along with sjogrens. I am freaked out about reading about lymphoma and sjogren's because of the lump I felt. The ultrasound revealed a small mixed mass I think in the periteneum with some bloodflow. My doctor wanted me to take antibiotics to see if it went away (said it could be an abcess or cyst). He said if it didn't I would need to see a surgeon for possible biopsy or removal. I am really freaked out right now, not only with the pretty probable autoimmune diagnosis but whatever this mass ends up being. Does anyone have any experience with PBC or cysts, or worse lymphoma? Does this sound like sjogrens? Thanks in advance.
I don't have those things--just SJogrens but I am very interested to hear what happens with this. I hope it all works out.!
I'm sorry to read all this, Lizalou. I know how the worry and stress can build in this situation. My first suggestion is to breathe. Even if the worst comes to pass, and you're positive for everything and some new stuff on top of it, you have plenty of time for treatment.
Your symptoms certainly could be Sjogren's. Has your doctor done the ANA bloodwork recently? That can change over time, and it might answer some questions.
I have Sjogren's syndrome and am a Lymphoma survivor. My mom had PBC. I have to say, I'll take the Lymphoma over PBC any day.
The good news is that the type of Lymphoma sjoggy's get is very slow growing and very treatable. And cancer treatments are getting better, and less invasive everyday. One of the top treatments for lymphoma is Rituxan, which is also an excellent treatment for Sjogren's. Yes, cancer is terrifiying, and it's exhuasting going though all the tests and treatment, but it's also still quite rare, and it's survivor rates are extremely good.
Interestingly, I also had bad pre-eclampsia during my first pregnacy and with my family history, my liver is watched very closely.
Right now, only the doctors can give you the answers you need, and there's probably going to be a lot of hurry up and wait. But you have a great resource here, with lots of people who understand where you're at and what you're going through.
Good luck with it, and if you have any more questions, please ask.
HL in NY- do you think the mass I found is suspicious sounding for lymphoma? I am seriously going on empty right now. I haven't slept good in a few nights. What I hate is the not knowing. I can't get into the rheumatologist for 2 months! I will go crazy by then...literally. I am tempted to call another one and see if I can get in quicker. I will schedule with the surgeon next week...do you think that is ok to see the surgeon before the rheumatologist?
See the surgeon asap,won't matter to the rheum, and he/she is the one who will get you the answer to your pressing question, what is the lump.
Of course it's terrifying to be in your shoes right now, but if it is an autoimmune disease, keep in mind that we get lots of weird lumps and bumps, and as someone pointed out, it's true that the lymphoma is generally very slow growing and treatable.
If you turn outt to have a autoimmune syndrome, it's not a death sentence, you will be just fine with some adjustments to your lifestyle, medications and care :)
I actually called the surgeon on Friday but they said I would need to have my PCP fax them the ultrasound report and my information and they would call me to schedule appointment. By the time I called my PCP they had closed (close at noon on Fridays). So I will take care of that Monday and hopefully will be able to get in sometime next week. I am going to try and enjoy my Saturday off with my husband and son (17 month old) and try not to think about all this. I'll keep you all posted. Thanks again.
Hi LizaLou
Just wondering how you are today? I hope you had a restful weekend with your husband and little boy, and managed to have some fun times.
Thinking of you - Chickpea
Hi Chickpea- Thanks for thinking of me. Well, things sort of changed today. It just wasn't sounding right that the AMA was homogeneous. I couldn't find anything online regarding pattern of AMA only ANA. I got my bloodwork results from lab and they did an ANA instead of an AMA. So my ANA was 1:2560. Doctor had ordered an AMA. I guess it doesn't change things totally but I am a little less concerned about PBC now and just wondering what autoimmune disease I have. Based on my symptoms I really think it is either lupus or sjogrens...or both? The surgeon wants me to have a CT of abdomen. I just went through fertility treatment and won't know until next week if I am pregnant or not. So I am going to wait until then. If I do get pregnant I am not really sure what the next step will be. Do you know if sjogrens produces that high of an ANA titer?? I got an earlier appointment with another rheumy in the area. Now I only have to wait until Aug 4th instead of the 25th.