View Full Version : Confused

chaotic mom of 4
07-25-2009, 12:44 PM
I was diagnosed with Lupus October 2008. It was really by accident. In January 2008, I fell and hit my head and was in the hospital for 5 days. When I was discharged, I was told to wear a neck brace for 2 months(no surgery was required). It was impossible for me to do with 4 children(my youngest was 8 months). I was told to see a neurologist, but didn't until October 2008. He did a lot of tests. My blood work came back and he told me I had a positive ANA because I may have lupus. He scheduled me to see a rheumy. I did and he told me that he was treating me for Lupus. I was put on Plaquenil and continued to be sick nonstop for 3 months(I couldn't keep anything down). He then changed my medication to Imuran. I wasn't sick all the time, but still felt so weak. I was told to give give it 3 more months. I started talking to others around town, during these 9 months, and realized that he was the doctor of 7 women that I met randomly and all were being seen for lupus. I found this kind of strange. I sought out another rheumy for a second opinion. I met with this doctor a bout a week ago. He told me that I didn't have lupus and diagnosed me with Fibramyalgia. I was happy, but floored by the difference in opinion. The medicine I was on, Imuran is really strong. He told me he couldn't understand why the other doctor would put me on something so strong for lupus. This new doctor has since taken me off, but I still feel awful. I need help on what to do. Do I get a third opinion or what? This has turned my world upside down. On one hand, I'm so thrilled to be told I don't have lupus and on the other so, confused by my body and how it feels. I could really use some help.

07-25-2009, 01:02 PM

I would probably get a third opinion, simply because you want to be for sure about something like this only because if it is in fact lupus and there are some meds that you should be taking, you want to start asap. Meaning you dont want to find out down the road that it couldve been prevented. If the next Rheumy you go to says you dont have Lupus than you probably dont, basicallly what Im saying is..... this thrid opinion should be the determining factor so if the doc say no, then at least you have 2 NO'S and vice versa. Im not a doctor, but I have been living with lupus for almost 9 years and I have a sis-in-lAW who has fibro and your symptoms sound like hers, I HOPE YOU DONT HAVE LUPUS!!! You are in my prayers, stay strong and think positive.


chaotic mom of 4
07-25-2009, 02:01 PM
Thank you for replying. I left out some info. I developed vitaligo about 8 years ago. The 2nd rheumy said I would have a positive ANA from that also. My symptoms include joint and muscle pain, mouth ulcers, memory problems, extreme tiredness,insomnia, extreme sensitivity to the sun(I blister up, even with sunscreen) . I told the 2nd rheumy I felt as though I was being a hypochondriac. I really like the 2nd rheumy, he seemed to listen to what my issues were. Thanks again, it is nice to have this forum to get advice.

07-25-2009, 09:33 PM
I am very sorry to hear that you are having so much problems. I think it is a good idea to get a 3rd opinion from another Rheumatologist. Lupus is a disease that is so difficult to diagnose because it mimics so many other problems. I hope you don't have Lupus but it is a disease that needs to be treated so if you do you need treatment. I actually take Imuran and have been on it for at least a year. It is the 3rd medication that my Rheumatologist have tried me on and the one that seems to be suppressing my symptoms. Educate yourself as much as you can and try to find a doctor that will listen to you. You are the key person in your treatment. Good luck. Vester

07-26-2009, 09:43 PM
hi chaotic mom of 4,

welcome to a truly great group of caring and knowledgeable people. We are world wide, and we all feel like family.

my main concern about your 2nd rheumy is that he said "he was surprised that your first dr. used Imuran for treatment of lupus. there are many of us here who take chemo meds for treatment. So, i was a little surprised by that comment. Also, i am surprised that your first rheumy took you off of plaquenil after only 3 months. It usually takes up to 5 or 6 months for plaquenil to work to its potential.

i also have fibromyalgia, and it is very painful. Did your dr. start you on any meds for fms? Lots of people get good results from Lyrica. I tried it, but could not take it for long....i just deal with fms pain.

again. welcome, and i hope you will enjoy our family.

07-27-2009, 10:45 AM
Hello Chaoticmomof4
Sorry to hear about your 2008 year...sucks to say the least. To have 2 different diagnosis sucks as well and I think I would go for a 3rd opinion as well. You just want to know for sure and narrow it down. I have been told that Lupus can be kind of tricky to diagnose. Sorry to hear your enduring pain as that is always terrible to deal with and try to maintain your life especially with kids who depend on you!
Welcome to the site and I wish you health!

chaotic mom of 4
07-27-2009, 11:28 AM
I really appreciate the replies. The 2nd rheumy I went to put me on Savella. I have been on it for 11 days. He took me off of Imuran and Cymbalta. I believe I do need to get a 3rd opinion. I appreciate the comments and support more than you will ever know.

07-28-2009, 05:04 PM
Just wanted to chime in with everyone else to let you know I am thinking of you and I am sorry you are suffering. I agree, a third opinion might be necessary. It does seem odd that your first rheumy would take you off the Plaquenil and then put you on Imuran so quickly....then to have a second rheumy tell you it is not lupus at all. Conflicting opinions are not so unusual, but the ease with which the drugs are offered and then changed gives one pause....

Diagnosis is a challenge, certainly. Do some research before you set an appointment with the next rheumatologist. Find one who's background and practice fits your criteria...whatever that may be. The best advice I can give you is to treat your illness like it is a job. The most important one you've ever had (raising children aside...). This is the "business" of your life. Keep notes, records, a journal of your symptoms (when they come and go, triggers, etc.). Take charge of your care and take charge in your appointment with the doctor. You are not a chemistry experiment. Research the drugs before taking them so that you can have an informed discussion with the doctor about the side effects and potential consequences of not taking a particular drug.

I wish you the best. Please keep us posted.


Angel Oliver
07-28-2009, 05:20 PM
Oh im sorry to hear what you have been through so far.YES get another opinion...im on my 4th.I know its frustrating but doctors do get it wrong sometimes,well in my experience anyway.Just know we are all here to support you.Hope you begin to feel a little better soon.

love n hugs Amanda.xxxx

chaotic mom of 4
07-28-2009, 08:37 PM
Thanks again for all the wonderful replies. I'm actually going back to my 1st rheumy tomorrow. I talked with his nurse and wants to talk with me. I have done a lot more research and decided to at least give him another try. I wanted to believe the 2nd rheumy because I don't want to have Lupus, but now that I've been off the meds, I feel even worse than before. My body is in so much pain. My feet are swollen. I could go on and on. I am so glad to have this group and can vent.

chaotic mom of 4
07-29-2009, 02:25 PM
Went back to the dr. He put me back on Imuran, Cymbalta and Predisone. The communication was so much better. I asked a lot of questions and I had done more research on SLE. I have lupus and I have to live and deal with it. I'm so thankful for this site...

07-29-2009, 03:06 PM
Sorry for your diagnosis. Hope the meds get you back on your feet (preferably unswollen feet) very soon.

Take care,