Unfortunately, here we go again...

The latest news is that I found out from the dermatologist that the type of porphyria I have is called pseudo-porphyria. Basically, this means that it is not hereditary. This type is often caused by a poor immune system (long-term antibiotic use). What he feels more likely is that poor kidney function contributed to it. It seems to have appeared following my renal sepsis. He says that once your enzymes hit a certain point in the blood that it will cause your skin to blister, essentially attacking your skin as if you are allergic to it. UNFORTUNATELY, he does not think that type is causing my other symptoms such as fatigue, weight loss, low-grade fever, pain (especially in my arm/shoulder). He told me to look for another source.

I got these results a week ago and since then, I have phoned all of my doctors. The infectious disease doctor ordered a scan of my cervical spine to see if something there was causing the shoulder pain. I had the scan on 10/28 and received a frightening call upon returning home, stating I had a cervical absess that could be life-threatening and I needed to return to the hospital (Northwestern) immediately. I chose not to go until yesterday (11/1) when they were able to schedule me for interventional radiology to drain the absess. Apparently, the absess is two centimeters in diameter, yet they were only able to drain a small amount of bloody fluid. Now I am home waiting for culture results. There is also concern that if there still is fluid in there, that it will need to be removed through surgery. UNFORTUNATELY, they feel that where the absess is it is probably not causing my arm/shoulder pain & I am going to see an Orthopedic doctor today to see if there is something else wrong. I am still awaiting return calls from most of my physicians & am quite frustrated that I've been feeling crappy for about two months now and still have no answers. Hopefully, we will get to the bottom of this soon. Maybe today. My doctor prescribed Percocet about ten days ago, which I take like candy. However, on Halloween, I discovered that martinis work just as well, if not better! LOL

Hope you all had a great Halloween and got lots of candy : )