Ok, this will probably get long but I will try to keep it short.
My husband began having abdominal pain just over 2 years ago. He is 34 now but this started when he was 31. He was hospitalized for elevated white blood count and they thought possible Diverticulitis but it was right side not left sided pain which is more common in Western cultures due to our diet.
So, they've done every test under the sun.
So far he has had or been told:
Gallbladder removed due to possible gallstone (it was a healthy galbladder according to the path reports)
Portion of sigmoid colon removed due to possible Diverticulitus (it was a healthy colon according to the path reports)
Other diagnosis include (which have not been ruled out but are now considered low on the totem pole..also I apologies for misspellings)
Porphyria, Crohns, Ceiliac, Lupus, Cushings, Lyme, Whipples, Wilsons, Clogged bilary ducts, exposure to depleted uraniume from the military, buldging dics in the T7...the list goes on
He has had tons of blood and urine work, xrays, Ct Scans, MRIs, colonoscopies, endoscopies, upper GI series, hydascans, CT Milograms, Ultrasounds, EEGs, EKGs, EMGs, Angiogram...the list goes on.
Abdominal Pain (number one and worse symptom) can be right side or left side
Extremely High Blood Pressure when he has an attack of pain
Developed a fatty liver
Facial Rash (but not a butterfly rash...it runs down the middle of his face)
His inner ears will flake (kind of like if you washed your hair and conditioner was left in your ear and dried)
Neuropathy in his legs.
Sore joints in his knees and sometimes his wrists
Occasional mouth sores
Occasional stuttering (although this could be from mini strokes due to the level of pain and elevated blood pressure)
Short term memory is becoming worse
As his doctor stated, clinically he could fit into 10 different categories but the test results are just not there. He does have elevated porphyrins but not enough to prove anything. His liver enzymes are sometimes up but not much. sometimes there's elevated white count or sed rates but not always and those could be for various reasons. They claim he has a very healthy pancreas and appendix.
So, any ideas. I feel like I've look at every rare disease there is out there on the internet. Again, he could fit so many categories.
PS - on a side note. I love to write and have heard so many horror stories of patients that went years waiting for a diagnosis. Often being told it was a conversion disorder or "all in their head." So, at the encouragement of friends and nurses, I am writing a book of encouragement and hope for those still waiting to be diagnosed. Still waiting for an organic answer to their symptoms. If you know someone that would like to share their story for me to include, please let me know. I will check this thread often.
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