I went to see my Nephrologist/Internal Medicine specialist yesterday at University of Mississippi Medical Center in Jackson. Dr. Fulop is a gem, I consider myself very lucky to have him in my corner.
He admits to being baffled by my condition, but we had a laugh about it and it made me grateful that he hasn't given up on me in spite of not seeing the improvement we had hoped for. It's funny how I always go in there wanting to crawl into a corner and cry, but I leave feeling better even though things haven't improved. He told me he believes in his heart that I will be well again, and I appreciate that. I've been very down about my condition, to say the least, and it helps to know that one of my doctors has faith in my recovery. Can I keep him?
Dr. Fulop is a bit scared of the idea, as am I, but I will be starting a trial of Diamox in addition to all the other meds I'm on. This drug works for some patients, but makes things worse for others. Worse is dangerous, but of course I won't know which category I fall into unless I try it. He told me to promise that my family will supervise me and get me to the ER asap if I feel any kind of attack coming on (not that the ER will do anything for me). So, this is a risky move.
People with HKPP have no choice but to be Guinea pigs, because the treatment and symptoms vary so much. As far as I'm concerned, I have nothing to lose. I don't want to live like this, so if there is any chance of a treatment working in my favor, I'm going to give it a shot in spite of the risks.
Wish me luck, and I'll keep you posted.