I put some of this in another post, but now I have a different question, so I'll summarize my situation again.
In 2005, I was diagnosed with MAA at Johns Hopkins. I lived in central IL. My appointment at JHU was setup based on evidence of pancytopenia. Things improved over the years, and I was monitored by a local hematologist who was comfortable with marrow-related issues and the head of my school health center was my PCP. I moved to New Mexico in 2012, was great up until ~1 year ago, and now have a series of symptoms. The waiting time for appointments is long here, so many of my tests have been through walk-in clinics. My problem may or may not be hematological; my CBC was pretty good about a year ago and is now the lowest it has been in a few years, but really not that bad. I have a small PNH clone (5% monocytes, 10% granulocytes) -- too small to be symptomatic. However, some of the symptoms are reminiscent of 2005-2006 and others are different. I have GI issues that are mostly resolved by avoiding gluten, fatigued, have upper left abdominal pain (and mild swelling), and my muscles are extremely sore (like back in 2005-2006, I don't recover well from exercise). I got worried last week when I fell dead asleep during my 15 minute drive home from work. I was fine when I hopped into the car, then at some point felt a sudden wave of overwhelming fatigue before I fell asleep at a traffic light. Since then, the muscle soreness has increased quite a bit.
1. Is it time for me to go out-of-state for a diagnosis? It made sense in 2005 because I had a striking test result. Now, I don't. I've been waiting quite some time for an appointment with a local GI doctor and hematologist. I think I saw this hematologist once last year. I had asked to be tested for PNH (based on a recommendation from Brodsky through email). The local hematologists thought it was a "waste of time" because "no one has PNH, they are just trying to sell some drug". The local hematologists do not specialize in marrow-related issues -- so am I just wasting time?
2. Denver or Phoenix? (For anyone who might live in those areas)
3. How do I avoid driving 6 hours for a 10 minute appointment in which we spend more time taking my weight and blood pressure than discussing symptoms?
4. I'm not sure the problem is hematological. Should I be seeking an aplastic anemia specialist despite my relatively decent CBC?
Thanks everyone. I'm so very impressed with the knowledge base on these forums. I apparently haven't learned how to be a good enough advocate for myself. Hopefully, one day I too can provide useful advice
