Does this disease progress?? My doctor acts like it's no big deal, like it's a walk in the park to have this disease. I actually have some lupus and scleroderma. Is it worse to have some of both? I just wonder what is the "real" consequence? Does anyone know?
I don't know if this will help, but it took almost 7 years or so of constant addition of symptoms for the multitude of doctors I visited to finally come up with my diagnosis. I have Systemic Lupus and the Lupus Anticoagulant.
First of all, I had acute glumerulonephritis. Next, I started developing headaches. Then, my body added the seemingly constant Ear, Nose, and Throat infections. As well, I started having seizures (non-epileptic in nature). Then, the joint pain set in. I also have bouts of pleurisy. On and on. At the time, it appeared to be one unrelated illness after another. I was later told that the delay in diagnosis could have a little to do with the fact that I am a male--you know...that doctors don't always look for this diagnosis as quickly in males. I don't know if that's true, but I was told that Lupus tends to strike females more often.
After years in pain management, my PM doctor moved. I was sent to another one in the area who had the audacity to say, "I've never heard of Lupus causing severe, long-lasting pain before." This particular doctor did not want to prescribe the pain medicine that had been working successfully for over 5 years. So, I went into my Internal Medicine doctor that same day on an emergency appointment--and he, my Internal Medicine doctor (at the time), decided to Rx my medications. I have continued with these meds successfully.
My point? YES, YES, YES. It is a BIG deal to have Lupus. Maybe your physician meant that you can adjust and do your best not to have it control you--BUT you must have medical assistance in many, many instances. Nonetheless, having Lupus is life-changing--to put it mildly. I am on permanent disability because of this disease, and I'm not happy about this at all.
Lizzy, hi. I agree that lupus always needs to be followed by competent doctor(s). That said, many people do remain fairly mild; progression is not a "given". It's really a continuum, with the dividing line being whether major organs (kidneys, brain, heart, lungs, etc.) are involved.
The severity described by Jon The Conductor falls on the profound, acute end (CNS, kidneys, APS). I'm an example of the chronic but subacute end (fatigue, joints, skin, anemia). Many people here fall (I think!) somewhere between these extremes.
[Hi, Jon! I'm so sorry you have so much to deal with & that help was hard to find. How grueling! Glad you've joined us here.]
Dr. Daniel Wallace covers the spectrum concept in his excellent hardcover, which is in most libraries. Dr. Robert Lahita is another excellent source.
I know little about scleroderma, but I think the CREST form is, by definition, limited (as opposed to the widespread systemic kind).
Most doctors I've met do NOT communicate well with patients; I got a little thin-skinned along the way (had some AWFUL things said & done to me). But, even so, we still have to do whatever it takes to keep ourselves as well & together as possible. I hope this helps a little. Hang tough! Sincerely, Vee
Thank you for the information you've provided! In spite of having Systemic Lupus and the Lupus Anticoagulant, I really don't feel like I know enough about the entire scope of my condition.
My current physician, a lady who commands my utmost respect (!), told me that she would learn more about Lupus so she could help me in the best way. She is the doctor who assisted me in the process of obtaining disability. Her approach was proactive. She sent me to a physiatrist (not a psychiatrist!) to aid in the assessment. Plus, I had nearly 3 inches of medical records.
After the medical evaluations were complete, I went to a Disability Consultant. Frankly, the process didn't take more than 6 months before I was receiving assistance. I was thrilled and thankful. Bluntly, going this route was difficult because I had planned a completely different path in life. My degrees are in Music Education (Bachelor's) and Choral Conducting (Master's). Sorry...that's another story for another time, I suppose.
The doctor I currently see is a specialist in Internal Medicine. She told me that I would probably be the only patient she ever saw that had Systemic Lupus and the Lupus Anticoagulant. What makes my condition even more rare is the fact that I'm male. This must run in females predominantly. Nonetheless, she treats my pain BETTER than any of my past physicians. She listens to me, and she even takes the time to look up answers to my Lupus questions from a series of medical school books based solely on my disease. Needless to say...I'm very impressed with her.
My posts are usually on the Pain Management Board, but I have been pleasantly greeted on this board. Thank you!!
Jon, good morning. You could look in the nearest public library for lupus hardcovers written for patients. Try Dr. Daniel Wallace &/or Dr. Robert Lahita. I actually think one (maybe both) wrote huge books for physicians, then published mini-versions for patients.
In addition to pain management, are you on meds for lupus (also for APS, if warranted)?
I think you should hang out with us here, too. So, see you soon! Bye, with best wishes, Vee