Needing Answers

As most family and close friends know, I was diagnosed with an autoimmune disease almost two years ago. My doctor told me it was either lupus or sjogren's syndrome, and with either case, I had a mild version. I've had "joint pain" since high school, which I control with ibuprofen and works great for me. I only talked to my doctors about it 2 or 3 times and it was always when I was pregnant or nursing, and I never worried about looking into it further. When I finally had it looked into, under the recommendation of a doctor I saw in walk-in, it was only with the intention of finding answers. I told the rheumatologist I was referred to, I wasn't there for medication, just want to look into my symptoms. In the end after my blood work proved an autoimmune disease, he put me on plaquenil, a medication to treat the disease, vitamin d and iron. I made sure I had to take it, as I really didn't want to be taking anything, who wants to take meds daily. At one point he prescribed prednisone to me, but I only took once, as the side effects of the medication scared me too much. For the first year, I saw my doctor in Spokane every 3 months, and then started every 6 months. He was a great doctor and always really nice and personable.

After having my two miscarriages, my current doctor wanted to look into the reason before getting pregnant again. There's possibilities with lupus that you can get blood clots, and he wanted to see if that was the case. I needed a new rheumatologist anyways, so he refereed me to one here. When I went to the one here, he wanted to know why I was coming to him, I told him about my previous diagnosis and my two recent miscarriages. He wanted to run a whole bunch of tests, and specifically wanted to test me for antiphospholipid antibody syndrome, which can cause blood clotting. I went and had 11 vials of blood drawn and three weeks later went back to him for the results.

He first told me that my test results came back negative for sjogren's syndrome. I thought to myself, that's great, so we have it narrowed down to one. Then he told me it came back negative for the antiphospholipid antibody syndrome and also lupus as well. I was really confused! He told me all my blood work was normal. I was really confused and a little dumbfounded! So if I didn't have anything, why was I treated for it for the last two years. I mean, it would be great and all not to have anything at all, and not to have to take any medications, but it was answers. I asked my new doctor, then why was I having pain all the time, and his response was well some people just have pain and no reason. He also suggested putting me on some pain medications. That was really disturbing to me, why would he put me on pain meds when I don't even have anything he thinks I should be treated for. I told him, I wasn't there for pain medications and I didn't want any, ibuprofen was enough for me! Matt also asked him a question, and he didn't really answer it, which annoyed Matt! He told me to continue to take my medication, as he wanted to retest me in 10 weeks and come back to him in 12 weeks. He didn't want to change anything just yet. He also told me he could take a look at my previous doctors charts if I would like him to. Well duh! I definitely wanted him to look at why I told him I needed to come to him.

I left totally annoyed, frustrated, lost, confused and emotional. I felt stupid, like I had been telling both my current doctors I had something I was only making up in my head. I don't know why it made me emotional, but I just kept tearing up. I was so frustrated. I don't want a disease, I don't want a blood clotting issue that makes me miscarry and I have to take more medication for, I just want answers! I want reasons for why my body does what it does.

I called my rheumatologist in Spokane and talked with his nurse. I told her my current test results and told her I wanted Dr. Mueller's opinion and why I was being told I didn't have the disease now, but I was treated for it the last two years. She later called me back and told me he was treating me for symptoms and test results that pointed to either sjogren's or lupus. He treated me for mild lupus and he was confident in his diagnosis and that I definitely had something going on according to my blood work. He also said that if my symptoms had gone away, that the disease can go in remission, which he told me before, but my symptoms have never subsided. In fact, I've been having a major flare up, needing ibuprofen everyday, sometimes twice a day to combat the pain. I usually only need it a few times a week. The nurse said they would be sending my charts and blood work to my current doctor. It made me feel so much better to hear that Dr. Mueller was confident in his diagnosis.

I also talked with my family doctor, whom I love and appreciate for the great doctor he has been, and I told him what happened with the rheumatologist. He understood my frustration, and my concerns that the doctor was just willing to give me pain meds if I requested them. He told me to stick with him until after I get my next blood work and results. He said that obviously if the rheumatologist wanted me to continue with the medications, he wasn't confident with the results. After that he wanted to send me to a perinatologist to look further into the miscarriages. I told him how it was discouraging to wait another 3 months to look into it further. He told me I'm young, I still have plenty of year of fertility and in the whole scheme of things, 3 months really is not that long. Of course he's right, and it will be fine. I'm an impatient person and just want to get this all figured out. I'd like to know that when I'd like to have another baby, I can!

I just had to vent and get my frustrations out there. I don't mean to complain and make my situation more then it is, or for people to have to read about it. People have it much worse then me. I would just like to have answers, or just to know if I'm crazy, and why would one doctor tell me I have something, and another doctor tell me I don't. What I really care about here, is finding the answers to why I've had two miscarriages, when before I've had three prefect pregnancies!

Since I'm on the selfish subject of me, can I share one last annoying frustration! :) I gained almost 10 pound during my last pregnancy, that only lasted 13 weeks. It was annoying during the pregnancy (when I thought everything was fine) that I was putting on weight so early. Once I miscarried, it didn't just go away. I'm sure it's different when you go full term, have the baby and then nurse and your body takes care of most of the weight gain for you. Between the pregnancy weight, and the holidays, I think I weigh more now then ever, not considering pregnancy or post pregnancy. It's not a good feeling and it's really annoying me!