More waiting. My GI appointment to follow up with the biopsies from my endo/colonoscopy was pushed back to December 10th. Nothing like waiting over a month. My sister has began to experience severe diarrhea. She has had minor issues for the past couple of years, but in the past month or so, it has impacted her quality of life, and she has started to feel like crap. She is going to a different GI then me, but he ordered a full blood work up and a colonoscopy. I'm anxious to hear what her blood work says, and I'm hoping they tested for things like C-reactive protein, sed rate, and IgA levels.  Eventually we should both be seen by the same doc, since our symptoms are very alike. There has to be some kind of genetic component at this rate. Our paternal grandmother has had ulcerative colitis from the age of 17 on, and our maternal grandfather has had everything from ulcers to severe GERD. I'm also interested in the autoimmune aspect. My brother and I have had extremely bad allergies, Ezcema, and asthma since early childhood. Seeing as I have nonexistent IgA levels, I really do think there is an underlying immunodeficiency. It bothers me that none of my doctors have followed up with this possibility. Since we cannot get a definite crohns diagnosis, I feel that we have to look beyond the GI system to get an answer.

I scheduled an appointment with an immunologist for the beginning of the year. Besides allergy testing, I am going to ask for IgG, IgM and IgE blood tests. I know that IgA deficiency is fairly common, but given my situation and the severity of my case, I just want to be sure. I am my own medical advocate. I feel like House, MD trying to solve my own case. I have been the one putting my own puzzle pieces together for the past two years, why stop now.

In other news, I finally received the results of my sleep study. I got to see a pulmononigst, who specializes in sleep medicine. I have mild sleep apnea, which was somewhat surprising. I also have extremely disturbed sleep. My body only went into REM sleep once during the night, while an average adult goes through 4-5 cycles. The quality of my sleep is extremely poor. My doctor does not know if it is from my psychological issues stemming from my TBI or if the TBI itself damaged the mechanical aspect of my brain, not allowing me to sleep right. Disturbed sleep is extremely common in those with TBIs. Since I'm already on sleeping medication, my doctor prescribed me a medication to try to help me stay awake during the day, and to battle day time sleepiness. Since I have tried almost every sleep medication to no avail, the doctor thinks that I have a mechanical issues, and that no matter what I try, my brain will never sleep correctly. I have a few follow up appointments and will be starting this new medication soon. I sleep between 10-13 hours a day and nap every single day which is so abnormal for someone my age. He was shocked that no doctor has ever recommended a sleep study before. Once again, my own advocation is finally paying off.

So much on my mind right now.