Thanks Bill for responding...You asked about significant muscle weakness yes I do...the advice of keeping a log is an excellent idea.... There are so many things to remember and not sure how long before I actually get an appt with rheumotologist..Right now I am feeling pretty sad and hopeless and would love any input anyone has I am a new member...
God Bless you all,
Would you answer yes to any of the specific questions about muscle weakness? If so, there is a possiblity that you have a myositis disease. Lupus can also cause muscle weakness but myositis (that is a category for several types of inflammatory muscle diseases) has some telltale symptoms. You can also have an overlapping connective tissue disease which includes lupus. I have mixed connective tissue disease which is lupus, scleroderma and polymyositis.
I know you must be worried but diagnosing what you have can be challenging so finding an experienced doctor is important. Get a second opinion if you are not satisfied or unsure. Most of us have done that.
Early diagnosis and aggressive treatment are important and make controlling whatever you have, if it is an auto immune disease, less of a challenge.
It is easy to say but you should gather all the information you have on your symptoms and medical history. My disease is very rare but it was diagnosed within a few months of the first flare. It was also an extreme case....off the charts but I have recovered remarkably and live a fairly normal but less active life. Most AI diseases are treatable and many can live a normal life. I am a good example of how bad you can get and how you can still recover and return to function and even some fun.
Every case of auto immune disease is different in their manifestation and severity. That is why diagnosis and treatment is sometimes so difficult. Coming to a forum like this is a good first step. Someone has probably experienced what you are and can help.
If you do have a myositis disease there are a couple of other forums that are excellent. Depending on where you live there are often local lupus support groups. I am going to a meeting tomorrow night. Many of the attendees will have lupus and even other AI diseases. Check out the www.lupus.org site for locations. The Myositis Assn also have local support groups but not as many as these diseases are much rarer. The forum is very active and good.
Sorry you are having problems and hope you can get a diagnosis and treatment soon. Get an appointment with a rheumy as soon as you can.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (7mg & tapering), 150mg 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