This may seem like a strange question but would anyone share with me what their follow up appts With your rheumatologists are like. When I go to the doctor he wiggles the first knuckle on my index fingers, tells me my issues are not related to lupus, blood tests, see you in six months. If this is normal then I am all good. I was okay with it until I began reading the posts and I am learning that maybe my complaints of joint pain and fatigue maybe are related to my lupus.
I have one dr tell me I have lupus becuz of all the signs and symptoms even tho the blood tests says no. And another says becuz the blood tests says no there's no way I can have it and that my symptoms are unknown relation at this time. Like my butterfly rash. Or my mouth and nose ulcers. Those aren't associated with other disease. So who knows???
Find a Rheumatologist that is compassionate. I love my doctor. Lupus symptoms are so wide spread and vary. My doctor will shrug when I ask if this is Lupus symptom. My doctor asks me questions, checks my range of motion, listens to heart and lungs. She encourages exercise and healthy diet and Folic Acid Supplements. I have a GP that works with the Rheumatologist. He makes sure all other illness/disease is addressed. I have slow thyroid, type II Diabetes, allergies. I understand most Lupies have thryroid issues or other auto immune issues.
I feel the same way. That what my dr says. But I feel horrible and have all the symptoms but blood work says I'm fine. I don't know what to do .
I can tell you that Joint/muscle pain and inflammation is aggravated by Lupus. When I was diagnosed, I had Carpal Tunnel in both hands, arthritis in fingers, knots on my palm by my thumb joints that hurt, degenerative Disk disease and arthritis in my cervical(neck) spine. It felt like I had been hit by a truck. I could not dress and undress myself without terrible pain. I have been on Plaqenil for about 5 months + voltaren gel as needed and mobic anti-inflammatory + Folic Supplement. I went through Aquatic PT, I walk daily....and when Plaqenil kicked in the pain is very minimal. I DO believe all joint/muscle pain is Lupus related.
My Dr. was willing to put me through more PT-traction for my cervical spine, but I am toughing it out for now.
I go to the Rheumy every 3 months. I have a written list of symptoms that I go over with him. I had back pain so great that he finally did an xray. Seems the cartledge in both SI joints is missing by half. After that experience, he listens closely to my list. If you are not getting the level of care you expect, please talk to him about it. I may not be his worst patient, but I am my ONLY patient. It's all important to me. Good luck on your next visit.
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