Thursday, October 22, 2009


Increased prednisone, trying to decrease back down to management dose, still flaring time to try a different steroid.

Hip injected Friday, lots of scar tissue made it difficult, still waiting for it to kick in.

EEG Friday, have to go to bed at midnight and wake up at 4 then stay awake till appointment at 2:30.

Tuesday, October 13, 2009

Infections, test results, and lab canceled tests

After feeling lousy all week I finally realized about 5pm on Sunday that I had a bladder infection so we headed off to the urgent care and got a script for an antibiotic. It seems like I have the wrong antibiotic since it isn't getting better as fast as would be appreciated. The culture came back yesterday and it is the right one, the staphf proved susceptible to cipro. Some of my endocrine tests came back and my estrogen and a few others are super low, which indicates a pituitary tumor. The lab canceled one test because there wasn't enough blood but didn't tell my doctor for three weeks, so we have to get that redrawn and wait for the results before we do the MRI to look for a tumor. She is also checking me for congenital adrenal hyperplasia because it could be accounting for my nausea, so on Monday I will be having a cortisone stimulationtest at sweedish. My MRI of my hip finally came back and I have inflamation in the miniscus and acetabular tendon, which is something that we can't really do anything about.

Next Week:
Monday Cortisone stimulaton test 4 hours and blood work
Tuesday: Lumbar MRI and urologist
Wednesday: Hip surgeon and dentist

Wednesday, October 7, 2009

Different Doctors Different Opinions

I saw my urologist at Childrens last Thursday and as a result we decided to stick with him until I have to transfer out of the system. He thinks that all the test the other guy wanted to do are unnecessary because they won't change what we are doing now and will likely just cause more problems. Because of my increased UTI's he wants me cathing twice a day which sucks, but eventually might get me off detrol and valium.

We got the letter Dr. Elias sent to my PCP and she said that my hip is healed and that I have keiloid scars and that the scars on my arms (which are definately the typical cigarette paper scars of EDS) look like psoriasis. Plus she said that I most likely have a very mild case of EDS, yeah right! Clearly she hasn't read my PT or OT notes or remembered my physical exams. I score a 8 on the beighton scale and I have sores that haven't healed yet after years! I see another specialist in that clinic today that specializes in transfering kids out of the Children's system so we will see what she has to say about that. I may end up going to Baltimore to see Dr. Francomono after all since no one here really knows what to do.