Posted 12/11/2007 9:04 PM (GMT -7)
It is debatable how long I have had lupus. First early warning was in Sep 2004 when my platelet count dropped. I had low platelets and mild anemia for at least 15 years before that but was in excellent health with no symptoms of anything. Then it dropped further, still no symptoms, and my internist sent me to a hematologist. He tested me multiple times for 7 months and then speculated that I might have lupus....he had ruled out almost everything else. 2 months later I had my first flares which resembled gout (swelling in a big toe) briefly and then the swelling, redness and pain spread to both feet. The same symptoms spread to my arms/wrists/hands and I had joint pain...all my joints. about 2 months later my rheumy diagnosed lupus and then 2 months after that mixed connective tissue disease (lupus, scleroderma and polymyositis).
My case is not typical and it was the worst case of mctd that any of the doctors had ever seen. Lupus attacked my kidneys and entire digestive tract. Some of my problems could have been caused by any of the diseases but lupus was a major factor and 2 years ago I almost died. Polymyositis overwhelmed my liver and I had hepatitis and lost 40 lbs of muscle. I started 2006 as a quadriplegic who could not swallow.
Today I did an hour of tai chi and in the next week I intend to downhill ski again.
Most people with lupus or even mctd do not have a case like mine. Lupus can be very difficult to diagnose and the symptoms can vary and come and go. Don't be afraid to get a second or even third opinion. I had 3 rheumys treating me at the same time and even now have 2...a senior one and a local one who work together very well.
Since 2005 I have not had a single flare or relapse which is not typical. Nothing about my case was but you will learn that every case is different. Don't know where you live but if there is a LFA support group in your area I suggest that you get in contact and attend their gatherings. I have been active in a lupus group and a myositis group and it has been a big help. You will find people who have had your experience and/or can help you through the tough times.
Lupus is called the disease with a 1000 faces and it is. What I have is even more complex as it includes 3 diseases and also manifests itself very differently in all cases. Diagnosis is often the sum of several symptoms and tests and is not always easy to get. Look at the Lupus Foundation site and there will be a list of common symtpoms that can help you and your doctor in diagnosis. I keep a log of all health issues in an excel spreadsheet so I have a record of everything and can compile a report to give to a doctor.
Good luck and I hope you do not have lupus but if you do be aggressive in getting a diagnosis and treatment.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller