- CASE FILE
Complex medical history including Ehlers-Danlos Syndrome, Psuedotumor cerebri, narcolepsy, and multiple issues with GI, Utinary, and bowel
ABOUT THIS CASE FILE
Ehlers-Danlos Syndrome (Hypermobility), Narcolepsy, Idiopathic Intracranial Hypertension, Gastroparesis, Bladder Dystonia, Severe abdominal pain and cramping, rectal evacuatory dysfunction, chronic migraines, IBS-D, incomplete bladder emptying... these are a small portion of the medical issues I am dealing with. I have had 14 surgeries, 6 of them in the last 7 years. I am 33, and after having a VP shunt surgery on my head 5 years ago I have developed significant problems with my urinary, bowel, and GI systems. I am forced to use catheters daily, and deal with consistent urgent diarrhea and severe stomach pain and cramping. The amount of effort it takes to use the bathroom is totally inconsistent with the BM, and the extreme effort leaves me drenched in sweat and has caused me to pass out on multiple occasions. I’ve had multiple tests, including Endoscopy, Colonoscopy, Urinary Dynamics, Gastric Emptying Studies, Xrays, CT scans, MRIs, soooo much bloodwork etc. I am on over a dozen prescription medications for various symptoms but I don’t have a concrete reason for all my issues. I suspect it’s tied into the Ehlers-Danlos Syndrome as a connective tissue malfunction, perhaps Dysautonomia as a comorbidity, but I can’t get any firm answers. I have tried to get into the autonomic clinic at Vanderbilt but due to the narcolepsy and amphetamine meds they said I don’t qualify to even be evaluated. I’ve been tested for endocrine tumors, cancer, MS, Parkinson’s, lupus, and dozens of other illnesses. Please help, I’m only 33 and i am desperate for help.