Over the years I have regularly added to my list of chronic symptoms. I began suffering debilitating headaches. I assumed that these were either the same migraines from which my mother suffered, or were the result of the sinus and allergy problems I'd had since childhood. My doctors treated me for chronic migraine.
A few more years and I began to suffer from migratory joint pains. Some days it would be a shoulder and wrist; the next day it might be the ankle and knee on the opposite side. Some days there were no joint pains at all, and on others I felt like the day after a car wreck. My docs assumed that along with the Crohn's I had another autoimmune disease, rheumatoid arthritis. Part of an overall autoimmune "package," so to speak.
Next I noticed that my feet were feeling cold all the time. When I took off my shoes to rub some warmth into them, they felt nice and warm and normal to my hands. I went to a neurologist, who ultimately determined that I had a rare form of something called peripheral neuropathy. After a nerve biopsy that has left one of my calves completely numb, my doctors told me that what I had was a progressive degenerative disorder of the sensory nerves in my extremities. My brain was compensating for the loss of actual sensation by providing me with false sensations of cold, or heat, or electricity, or bugs crawling on me. One of my doctors at the Hershey Medical Center likened it to ALS (Lou Gehrig's Disease) but of the sensory nerves rather than the motor nerves. I have since lost a little motor function as well, but most of the nerve damage seems to be confining itself to sensory reception, for which I am very, very grateful. I may not be able to feel the floor under my feet, but I can still walk on it. Once again, I was told that this was part of my autoimmune package.
I began taking some pretty heavy duty drugs to suppress my immune system -- we're talking the same drugs, at the same doses, that organ transplant patients get -- and that seems to have my autoimmune disease under tenuous control. It's not great, and I still have plenty of "incidents," but for the most part I can live my life.
Still, I have always wondered what was really going on inside my body. It seemed to me that there ought to be more of a connection between all my symptoms than "autoimmune package."
Last night I watched an episode of "House" that we had recorded last November and never watched. The final diagnosis was "Extraintestinal Crohn's Disease." I had never heard of extraintestinal Crohn's, and believe me when tell you that when I was first diagnosed, I studied Crohn's quite extensively. But there it is: extraintestinal Crohn's Disease. Finally, somebody has started putting the pieces of the puzzle together! I quote now from Wikipedia:
"In addition to systemic and gastrointestinal involvement, Crohn's disease can affect many other organ systems. Inflammation of the interior portion of the eye, known as uveitis, can cause eye pain, especially when exposed to light (photophobia). Inflammation may also involve the white part of the eye (sclera), a condition called episcleritis. Both episcleritis and uveitis can lead to loss of vision if untreated.