On the road to a Porphyria diagnosis, I feel like there are a lot of these signs!
Every day I feel better, which after the year I'vehad is amazing in itself. I recently told my mom, "A coupleof months ago I was happy when I only had a few bad days, now I'm down tobad moments." I've been off of birth control pills (estrogen) for 9 months now... and finally I'm able to do what I want, when I want and still feel good. My old friend Vertigo still visits, but she doesn't stay as long (used to be days...sucks) and isn't as strong. The other day I had a few hours of severe nausea, carrying a plastic bag with me just in case. But that's really my main complaint at this time. Yes, there are other porph things in my life: clusters of small blisters on my fingers and toes, edema (but better since being on a diuretic), headaches, black spots in my vision occasionally.... you get it. But for those who have survived a porph attack, or those that have witnessed such attacks, when you're down to these small complaints, it feels like a victory!
However, with feeling better comes a new problem; do I continue to search for my answer/diagnosis? Part of me says just wait to see if you get sick again and if you do, deal with more testing at that time... after all, that's when my levels will be elevated again. But the other part says do the work - research, phone calls, time on the internet doing crazy google searches trying to find something I haven't already read, seeing new doctors, reading over my stack of medical records again and again - while I'm strong and have the energy to do so.
Many of you have emailed me personally and shared your story. I would say that very clearly, the majority have seen a hematologist. I, on the other hand, have not. It might be the only doctor I haven't seen in the last 2 years! The reason I haven't seen one is because Dr. Premier wants me to see someone who has treated a porph before... well good luck there. Even living in a large city, he hasn't been able to find someone. Many of you have offered to send me your hem's contact info to do a phone consultation, and I'm sorry if I haven't answered you, it's just that I don't really know what to do right now.
So the question is, do I find a hematologist to see/consult with now or just live life and cross that bridge when I come to it? This is not a rhetorical question, I would actually like someone's advise!!!