I went to see Dr. B this afternoon to follow up from the drama that ensued back in June.
I've lost some weight. More to go, but I was surprised and relieved that I had not gained.
My potassium remains on the low-normal side, in spite of my heavy supplementation. It could be worse, but I really do need it to improve somehow.
My creatinine was high once again. It keeps fluctuating between normal and high. We have no idea why this is happening, but it seems to be the nature of my kidneys. Seventeen years ago, I was crippled in the hospital, and the doctor told me that my kidneys are frustrated. In fact, he documented it as whatever "kidney frustration" is in German. What it boils down to is that my kidneys are working harder than average to try to be normal, and they get exhausted sometimes (as does the rest of me). My electrolytes and other substances, such as hormones and blood sugar, also fluctuate quite a bit. I've come to the conclusion that it's all related to the fact that I have a channelopathy, but I'm no medical expert (just an expert patient).
I feel like I'm getting a sinus infection, but I am unable to safely take antibiotics or antihistamines, so I was given samples of Deconex DMX in hopes to keep the issue at bay. I'm pretty miserable at the moment. Wish me luck.
My Vitamin D, which stays consistently low, was checked. The results should be in tomorrow. We talked about the fact that I have a history of pulled and torn cartilage and skeletal muscle, which points to Osteomalacia (adult Rickets, caused by chronically low Vitamin D). I'm on a very, very high amount of prescription D, but he said he'll raise it even more if we have to. My body clearly has some sort of problem with absorption.
We talked about my digestive system, which has always been pretty lousy. I have a hernia, severe acid reflux disease, and Gastroparesis. All of the above are painful and problematic. I'm going to increase my over the counter magnesium intake to see if that makes a difference. Surgery is out of the question thanks to my high risk of death under anesthesia.
Doc and I agreed to a complete thyroid panel, which will look for peroxidase and thyroglobulin antibodies. This test will rule out Hashimoto's and other thyroid conditions once and for all. I'll have results in two days.
Thus the reason why this is part one of two. I'll update with the results later this week.
No progress on obtaining Keveyis. I've left a voice mail for the nurse to follow up.