Sunday, March 28, 2010

Thank You, Dr. House!

Forty-four years ago, I was diagnosed with Crohn's Disease.  I was 13 years old.  For those who may not be familiar with the disorder, Crohn's is a chronic inflammation of the gastrointestinal system.  The cause is not known.  There is no cure.  There is no reliable treatment.  Different regimens work differently for different patients.  I had been suffering from acute abdominal pains about an hour after eating, and nothing I did seemed to change that.  Sometimes I was able to all but ignore the pain.  Sometimes I thought my appendix had ruptured.  Finally, after some nasty tests involving pouring liquid barium into my various orifices, it was determined that I had regional enteritis, aka Crohn's Disease.  Since the initial diagnosis I have had two surgeries to remove parts of me that were deemed to diseased to remain inside.  I also had to have two additional surgeries to deal with the non-Crohn's consequences of the other two surgeries.

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.

"Crohn's disease is associated with a type of rheumatologic disease known as seronegative spondyloarthropathy. This group of diseases is characterized by inflammation of one or more joints (arthritis) or muscle insertions (enthesitis). The arthritis can affect larger joints such as the knee or shoulder or may exclusively involve the small joints of the hand and feet. The arthritis may also involve the spine, leading to ankylosing spondylitis if the entire spine is involved or simply sacroiliitisif only the lower spine is involved. The symptoms of arthritis include painful, warm, swollen, stiffjoints and loss of joint mobility or function.
"Crohn's disease may also involve the skin, blood, and endocrine system. ...Crohn's disease also increases the risk of blood clots; painful swelling of the lower legs can be a sign of deep venous thrombosis, while difficulty breathing may be a result of pulmonary embolismAutoimmune hemolytic anemia, a condition in which the immune system attacks the red blood cells, is also more common in Crohn's disease and may cause fatigue, pallor, and other symptoms common in anemia....
"Crohn's disease can also cause neurological complications (reportedly in up to 15% of patients). The most common of these are seizuresstrokemyopathyperipheral neuropathy,headache and depression."

It's basically a laundry list of most of my symptoms!  Rheumatologic disease, anemia, neuropathy, headaches, and let's not forget depression because I have also had plenty of that....

They aren't any closer to a cure, but it sure is nice to know that the picture is slowly coming into focus.  And to know that I'm not crazy; it really IS all connected.  For most of my life I have been waiting for an answer, and finally, finally, it's looking like that wait was not in vain.  Thanks, House.

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