Sorry about this post. I'm kind of using it as a way to organize my thoughts about my illness before my doctors visit today at 3:30. I guess I could use notepad instead but I could use comments and suggestions also.
Update: Well I got my pill cam results back and they are completely normal. My doctor said that he is baffled, not a good sign. Anyway, he is going to talk with a imaging person about my abnormal MRI and he also said that he is going to take my chart home and review it.
I'm honestly starting to think that I do not have at all Chron's. I'm happy about that but worried regarding what it could be. Here is what I got so far.
Abnormal MRI - Concentric Wall Thickening, Mild to Moderate Luminal Narrowing and Mural Hyperenhancement involving the Terminal Illium, Consistent with IBD or other causes. Small amount of independently layering fluid in the pelvic cavity, which was new from a few weeks prior to my MRI. Tiny fluid filled cyst in the right kidney.
Abnormal Blood - CRP 58.2 (Protein in blood that rises because of inflammation), ESR 41 (Nonspecific measure of inflammation), Lymphocites % 7.3, Neutrophils % 91.5 (Common in stages of accute inflammation), 10-15% Bandemia (Is a signifier of infection (sepsis) or inflammation), Lymphocytes 5.2 Low, Monocytes 2.9, Neutrophils Absolute 8.1 High, Lymphocytes Absolute 0.5 Low, Glucose 131 High, Akaline Phosphase High, HGB 13.3 Low, HCT 38.4 Low.
Body Symptoms: Current weight 128 pounds 5 feet 9 inches. I was between193 and 187 about 6 or 7 months ago. I seem to be loosing about .40 pounds a day. Abdominal pain, numbness and tingling in left foot and hand. Cognitive difficulties, which include difficulty communicating written or oral, word finding problems. Definite cognitive decline from grad school honors to where I'm at now. Problems with walking and balance. Irritability. Low grade fever documented at last two ER visits. Blood pressure documented from 170/95 down to 90/56, at different times. Chronic constipation. I don't think my bowels are working at all.
Negative Tests: Endiscopy- Just showed inflammation of the stomach and esophagitis, Colonoscopy - Normal, Colonoscopy Biopsy - Normal, Pill Cam - Normal.
Medical History - Obstructive sleep apnea (I also have central apnea but not as bad), upper airway restriction syndrome, periodic limb movement disorder.
Medications - Gabapentine 300MG, for periodic limb movement disorder, Zolpidem 10MG, for sleep, Prednisone 60MG, was for Chron's but who knows now, Omeprazole, 20 MG for stomach acid. I'm also on CPAP.
Funny thing about the Prednisone, it did not give me rage or anything like that. I actually felt less irritable after I started taking it and my mind has been getting clearer then it has been in years. I have lost another 7 pounds since I started taking it which also seems abnormal. I also don't have all this extra energy that everyone keeps talking about while on it. I'm still in bed when I'm not at work.
You detectives have any ideas for me. What do you think it could be? My doctor suggested at the last visit that I could have some rare blood disorder. I looked up a bunch of stuff and I really don't see anything that fits perfectly. I looked up Lymphoma which could cause issues with the small bowel and could explain some of my blood work. But that is pretty rare in the small bowel. I think less then 3% of Lymphoma. I would also think that It would show up on the pill cam. I also considered MS because of my cognitive issues, numbness, and walking problems, but who knows about that. I have been having those problems for a long time also and my MRI a few years ago was normal.
I'm pretty much at a loss. Considering I have been loosing about .40 pounds a day for the past 6 months, I only got 320 days before I disapear completely. HA HA. I feel like that guy in the movie "Thinner" by Stephen King. Anyway, sorry for my ramblings. I'm actually very happy today. The weather has been great, my mind is clear, and I'm not irritable. Life is good!
Update: Well I got my pill cam results back and they are completely normal. My doctor said that he is baffled, not a good sign. Anyway, he is going to talk with a imaging person about my abnormal MRI and he also said that he is going to take my chart home and review it.
I'm honestly starting to think that I do not have at all Chron's. I'm happy about that but worried regarding what it could be. Here is what I got so far.
Abnormal MRI - Concentric Wall Thickening, Mild to Moderate Luminal Narrowing and Mural Hyperenhancement involving the Terminal Illium, Consistent with IBD or other causes. Small amount of independently layering fluid in the pelvic cavity, which was new from a few weeks prior to my MRI. Tiny fluid filled cyst in the right kidney.
Abnormal Blood - CRP 58.2 (Protein in blood that rises because of inflammation), ESR 41 (Nonspecific measure of inflammation), Lymphocites % 7.3, Neutrophils % 91.5 (Common in stages of accute inflammation), 10-15% Bandemia (Is a signifier of infection (sepsis) or inflammation), Lymphocytes 5.2 Low, Monocytes 2.9, Neutrophils Absolute 8.1 High, Lymphocytes Absolute 0.5 Low, Glucose 131 High, Akaline Phosphase High, HGB 13.3 Low, HCT 38.4 Low.
Body Symptoms: Current weight 128 pounds 5 feet 9 inches. I was between193 and 187 about 6 or 7 months ago. I seem to be loosing about .40 pounds a day. Abdominal pain, numbness and tingling in left foot and hand. Cognitive difficulties, which include difficulty communicating written or oral, word finding problems. Definite cognitive decline from grad school honors to where I'm at now. Problems with walking and balance. Irritability. Low grade fever documented at last two ER visits. Blood pressure documented from 170/95 down to 90/56, at different times. Chronic constipation. I don't think my bowels are working at all.
Negative Tests: Endiscopy- Just showed inflammation of the stomach and esophagitis, Colonoscopy - Normal, Colonoscopy Biopsy - Normal, Pill Cam - Normal.
Medical History - Obstructive sleep apnea (I also have central apnea but not as bad), upper airway restriction syndrome, periodic limb movement disorder.
Medications - Gabapentine 300MG, for periodic limb movement disorder, Zolpidem 10MG, for sleep, Prednisone 60MG, was for Chron's but who knows now, Omeprazole, 20 MG for stomach acid. I'm also on CPAP.
Funny thing about the Prednisone, it did not give me rage or anything like that. I actually felt less irritable after I started taking it and my mind has been getting clearer then it has been in years. I have lost another 7 pounds since I started taking it which also seems abnormal. I also don't have all this extra energy that everyone keeps talking about while on it. I'm still in bed when I'm not at work.
You detectives have any ideas for me. What do you think it could be? My doctor suggested at the last visit that I could have some rare blood disorder. I looked up a bunch of stuff and I really don't see anything that fits perfectly. I looked up Lymphoma which could cause issues with the small bowel and could explain some of my blood work. But that is pretty rare in the small bowel. I think less then 3% of Lymphoma. I would also think that It would show up on the pill cam. I also considered MS because of my cognitive issues, numbness, and walking problems, but who knows about that. I have been having those problems for a long time also and my MRI a few years ago was normal.
I'm pretty much at a loss. Considering I have been loosing about .40 pounds a day for the past 6 months, I only got 320 days before I disapear completely. HA HA. I feel like that guy in the movie "Thinner" by Stephen King. Anyway, sorry for my ramblings. I'm actually very happy today. The weather has been great, my mind is clear, and I'm not irritable. Life is good!
