Sarcoidosis presents some serious medical challenges for the medical community because so many of them seem to know so little about it but also for the patients who have it because they are often too easily dismissed by the very practitioners who are supposed to help them. Sarcoidosis certainly has some “classic” symptoms; a dry hacking cough, unexplained low grade fevers, night sweats, shortness of breath, wheezing and swollen glands. These are all the hallmarks of sarcoidosis…the symptoms everyone seems to know about…even ignorant doctors. A quick internet search gives you this information too.
Yet, sarcoidosis is a complicated disease that can impact any organ and therefore presents any number of odd symptoms, symptoms that are often misdiagnosed as MS or lupus or cancer or psychiatric issues…as in all in our heads. Sarcoidosis can cause kidney failure, eye pain and central nervous system issues including facial paralysis. Sarcoidosis can enlarge the liver and spleen and it cause cause joint and bone pain. It can also cause skin lesions and complications with proper cardiac function. Having sarcoidosis often reeks havoc on the body causing secondary problems like nerve damage and arthritis.
It’s really important when you have this disease to be educated about it and all that it can do to your body and the ways in which these things happen. It’s important because your medical doctors will often overlook these things because they are not educated about this disease or they will simply blame every medical problem you do develop on the disease when something else could very well be wrong.
It’s easy for those of us with this disease to do the same thing. We blame every new medical problem we have on our sarcoid and sometimes do not seek the medical treatment we should for something else that could be equally as serious. It’s also tricky to know exactly when to go to the doctor because with our constantly misfiring immune systems and the fact that most of us are on some kind of immune suppressing drugs, we do not heal like “normal” people. And let’s face it…we are also sick of going to the doctor!
But, it is important to be well educated on this disease so that you can make good decisions about when to seek additional medical care and when not to worry. A good general rule of thumb is to seek additional care every time you experience a new symptom and while you want to let the doctors in your care know that you have sarcoidosis, be sure that they are thorough in their examination and evaluation of your medical needs. If you feel your concerns are being inaccurately blamed on having sarcoidosis, push for addition information on the doctor’s thinking and be a strong advocate for yourself.
It’s easy to use this disease as a scapegoat for every thing that goes wrong in our bodies. We do it and so do the doctors who care for us. Sometimes, sarcoidosis is the answer and sometimes it isn’t. Whatever the case may be, being educated about this disease is going to help you be your own best advocate when dealing with a new doctor or when a new medical concern arises.