I was told many times over the past twenty years that my "mystery" disease was probably some type of rare auto immune disease. Well I am now fifty-one years old and have finally made the list! The list on the National Organization of Rare Diseases. If you go to their website and search Sarcoidosis you will find it amongst the other rare diseases listed. I was just thinking on all of the many doctors I have seen over the past twenty years and all of the many different theories that I was given. Here are a few of them...."you may have Lupus,or Multiple Sclerosis, or Lyme disease, or Lou Gehrig's disease, or Hodgkin's Lymphoma", or......on and on the list goes. I had one doctor tell me that my body was really not "text book" and he couldn't even think of a disease that would fit all of my symptoms! Wow. So now here I am with just a few simple lymph node biopsies and have a diagnosis for this rare disease! I had never heard of it and probably some of you never have either! It is indeed classified as an autoimmune disease that causes the body to attack itself. It causes granulomas or small lumps to form in the organs, especially the lungs, heart, liver, and can affect the eyes, skin, brain, nervous system and lymphatic system. It can cause you to be more prone to infections or other illnesses. It causes chronic fatigue, joint and bone pain, muscle pain, and basically makes you feel lousy all of the time... at least this is how it is for me. Sarcoidosis can have a more mild form that some people get that comes on suddenly, is treated and never comes back again but these people usually do not have any involvement with the lungs or other organs. I happen to be one of the "lucky" ones I guess, and it seems to be the chronic form of the disease which is more complicated. I have this other complication thrown in of having way too many lymph nodes involved besides just the normal chest ones that are usually involved with Sarcoidosis. But ...hey... I feel special... my disease made the list! I am indeed a rare bird!
