How to seek a diagnosis :) Local, Denver, or Phoenix?
 

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 :)

NM Runner,

I cannot answer the question about whether you have MAA or a hematological disease, but if you suspect that to be the case, I can give a very high recommendation for the colorado blood cancer institute CBCI at st luke's presbyterian medical in denver. They have been wonderful to me and have been patient with all of my questions and thorough (at least to the best of my knowledge) in their testing. I had a bone marrow transplant in 2014 but was originally diagnosed with MDS in 2010, so I never felt pressured to seek out a particular solution other than to keep an eye on the disease and that I would know when it was time to seek a different treatment option, which amazingly was true. I knew almost to the day when my marrow had changed for the worse and that I needed to move forward with treatment/transplant. I had visited 3 other hematologists for second opinions and felt that the time and respect I received here in Denver was above and beyond the others, and this included City of Hope in California ( a very close second - i really did like their approach and philosophy of treatment) and Mayo Clinic in MN. Along with my comfort with the doctors, the team based approach and level of experience of both the doctors and nursing staff is what pushed me to go with CBCI here in Denver, not to mention that their results for transplant were very good.

Thanks. Yes, definitely not looking for a diagnosis through this site, but rather if it makes sense it return to seeing an AA specialist if I have no idea if my current problems are hematological (could be something else entirely).

Thanks for the recommendation for the CBCI. It looks impressive from the site and that would not be a bad drive.

CBCI is an excellent hospital. I went there for a second opinion on my MDS and for my GVHD and was well treated. I had my transplant at University of Colorado about 5 miles from CBCI. I was teated very well. That was 2 years and 1 month ago. They tell me my MDS is cured. You might want to look at them. With the side effects I have had travel distance to the hospital and local support make me glad i chose a hospital that is wiithin driving distance.

Ray