Newbie - diagnosed Friday
I am new to this site and to Lupus. It has been a long hard road getting to a diagnosis, but Friday I was told by a rheumatologist that I had Systemic Lupus. I read some of the previous posts about being hard to find a good doctor. My primary doctor is actually a nurse practioner and I am very pleased with her care. She is the one who found my elevated blood levels and thought I had lupus or RA. I chose the closest city and unfortunately the doctor was not very pleasant or helpful. I have been battling fibromyalgia for over ten years and have hepatis C antibodies. The rheumatologist said, "How did you get Hepatitis?" I tried to explain that is was antibodies, but everytime I would say anything, it would be dismissed. He seemed relieved when the tests came back negative for Hepatitis. I only went back to find out the results of my tests, since the first visit was almost $400.
I knew nothing about Lupus until the first mention of it at my primary doctor's office. I still know very little, but it seems that when I mention it -people feel sorry for me. Since I have endured so much pain and fatigue with the fibro, I am at a lost of what to expect from the Lupus. The rheumatolgist asked if I wanted to take Plaquenil. Actually, he asked if I wanted to add ANOTHER medication! I said no, but my husband piped up and told him of my extreme pain and suffering. The doctor then handed me a paper and told me to read and sign it. I asked about a sentence that told about affecting bone marrow and when I asked about that, he once again dismissed me, by saying that never happens. He rushed me by handing me another paper to sign while I finished reading the one. He did say that if I take the Plaquenil I would have to take a letter (he scribbled really fast) to my eye doctor the next time I go. Fortunately, I had just come from having my eyes checked and had to go back to pick up my husband's glasses. I gave the letter to the optomolgist and he said that the test should be done prior to taking the medication. I go tomorrow for the remainder of the eye exam for the baseline for Plaquenil. The only thing the rheumatologist offered in way of instructions was to stay out of the sun or use sunscreen and a hat.
Besides finding a doctor that cares and has good communication skills, what else should I be doing?
I did see my chiropractor yesterday and he would not use the electrodes after the treatment because he thought he remembered that lupus patients should not do that. I asked about my TINS unit and he said no to that too.
I could use all the help I can get.
My first reaction is to say, FIND A NEW DOCTOR! I have been extremely lucky when it comes to a diagnosis and doctors, so I may have an unrealistic way of looking at this subject. If the doctor can't or won't tell you why you are signing anything, you should walk. It took me a long time to realize that I was the only one that was going to have control of my own health. As much as my husband loves me and wants the best, even he doesn't have control. You need to take charge of your own health, they may be doctors but you know your body best.
Sorry for being a bit harsh.
Good luck with everything
Thanks for responding and offering the advise. I am looking into another doctor and will not go back to that one. I found out from a co-worker that his partner is no better. I did get my eye exam completed today and everything was fine, so any good news is a blessing.
You ask the question "Since I have endured so much pain and fatigue with the fibro, I am at a lost of what to expect from the Lupus." I would say that you have likely had an auto-immune disorder for a while, and have just not had the right blood tests to find it. My guess is the fibro and fatigue are directly connected to what is now being called Lupus. Now you might be able to find something to help with the symptoms since it has a name. But finding a doctor who understands emotions and how to treat people would be extremely helpful. It seems like you have to travel out of town for a rheumatologist, and that probably limits your choices, but as far as I can tell, Lupus is a long road and can be a tough one at times, so it will be worth it to get proper nurturing care.
I also have hepititis antibodies, only mine are Hep B. That is probably of little relevance, but I thought it was interesting as a possible trigger or similar to auto-immune disorders. Who knows
Reply to Recenty Diagnosed
Thanks for responding to my post. I think you are probably right in that I have had the autoimmune going on for awhile. I appreciate the advise and will take it to heart.
Good luck with yours as well.