Last week I saw a new hip surgeon at porter hospital and an endocrinologist at Swedish. The hip surgeon was okay, he ordered an MRI which was on Monday after school to check for avascular necrosis, which basically means there is no blood flow to the femoral head and it dies which requires a total hip replacement which is definitely something that we don't want happening. The endocrinologist was amazing she was very intelligent and good at explaining thing and excited to help me out and learn about EDS along the way. The first thing she said to me after introducing herself was, "Do you really have Ehlers Danlos Syndrome!?!!". She is concerned about my lack of a period for three months and the lactation slowed hair growth sweating and acne and ordered several blood tests. She suspects either a pituitary tumor, congenital adrenal hyperplasia (a genetic disease which my cousin has), or early menopause among other things.
Monday I saw a new urologist at littleton hospital, he was also fairly knowledgeable and has one other patient with EDS. However he was a little condescending-and 2 hours late- and his PA treated me like a two year old, they want me drinking 2 litres a day and peeing every 2 hours. To check my emptying I was sent to the bathroom and instructed to pee, the instant that I pulled my panties down it ripped of some of the healing skin on my hip that stuck to my undies and started gushing. It soaked through my undies and two gauze pads that the PA put on it-on the plus side that office will never underestimate my healing issues after that demonstration. She scanned my bladder after my unsuccessful attempts and I had over 300cc and no sensation, most people are doing the potty dance at that point where as I usually don't feel anything until about a litre. Because of this I am high risk for infections so I got put on their infection protocal/program.
We ran from that appointment to an emergency appointment with Dr. Sodden my amazing GI at Children's and got a flat tire on 225 along the way (luckily we pulled off into the Aurora medical center parking lot and a few maintenance workers spotted us and had the tire changed in 5 minutes). He took an amazing amount of time with us and decided that for now the blood is nothing major to worry about and that we will just keep an eye on my blood counts to make sure I am not getting anemic. The reason the appointment was an emergency is that I have been having episodes of incontinence at night and a few times when Mom wakes me up for meds, have been confused and clumsy/unable to use my hands correctly. He thinks I might have a teathered cord, a chiari malformation, or some other sort of nerve problem (as does the urologist), or that I might be having seizures.
Today I saw Dr. Ellias the geneticist/specialty care and found out that my biopsy was negative for EDS IV which is a good thing and that she still isn't exactly sure what I have because I don't exactly fit any type of EDS, but that for simplicity's sake we will call it EDS. She agrees that seizures are a definate possibility and will follow up in three months. Tomorrow I see Dr. Wilcox my urologist at children's to see what he has to say. I will be having my cystoscopy at Children's with him even if I choose to go with the other practice because I feel much safer at Children's than anywhere else. Next week I see someone at Children's who can be my primary care for a few more years and specialized on transfering complicated kids out of the pediatric system. I also see Kelly (my counselor of 5 years) and the opthamologist in the next few weeks.
Possible New Diagnosis:
congenital adrenal hyperplasia
Cystoscopy(done under general anesthesia)
MRI of spine
MRI of pituitary
MRI of hip (done)
Tuesday, September 15, 2009
We finally received the results from my endoscopy, colonoscopy, and capsule endoscopy and the answer is that there really isn't one. They saw a small bubble/pouch in my small intestine, but that doesn't account for the blood or the nausea. The fissure that they saw last time and tried to blame is gone, but for lack of any other ideas he is still blaming it on the non-existent fissure. I have a meckle scan Monday but the radiologist said that it is a shot in the dark and pretty much a useless test because nothing is wrong (she did my bone scans in the past and thinks that everything is in my head even though we have difinative proof that it isn't) so we are off to the endocrinologist in hopes that my hormones are causing my nausea in addition to my missing periods and lactation. I need an MRI of my spine and hip to check for a tethered cord that may be contributing to my problems. We are getting a second oppionion from a hip surgeion that specializes cleaning up after other surgeons, I am also seeing another urologist that has a clue and unfortunately need a cystoscopy which means being put under for the fifth time this year.