I'm a newbie to all this stuff, but I have a very long story..........Recently had bloodwork for a suspected rheumatic disease come back with elevated MCV (102), everything else is normal range. No B12/folate deficiency or alcoholism. The history is: I have been under the care of physician "A" for over 1 year, watching me for a suspected autoimmune disease, but without typical signs. Bloodwork has been pretty normal, until the elevated MCV. I have a lot of bone/joint pain without swelling. This has progressed recently from peripheral joints to spine and neck, and from femur pain at night (episodic) to femur pain/other bone pain after being upright for more than a few hours. It can be excruciating. I also have neurological signs like tingling, ripping/tearing/feeling of motion in the tissues (legs mostly) to visible muscle twitching/cramping. This has been in the extremities in the past but recently has become all-over. I have Raynaud's, or like phenomenon, splinter hemorrages, episodic high blood pressure, swelling of lymph nodes and some kind of overwhelming fatigue. Most symptoms are episodic, except joint pain/raynaud's: on about a 6 week schedule, one good week, followed by one week of increasing fatigue, 2-3 weeks of horrible pain and dyesthesias, then one week of improvement and back to a good week. This is just for background, not expecting a diagnosis here.
The bone pain, severe raynaud's and fatigue, and now the elevated MCV are making me concerned about a possible bone marrow and/or red blood cell problem. (Some genetics here from my father, but I wasn't paying attention to details when he was sick/dying so I don't know what type). My blood markers for rheumatic disease have been normal. This past year of problems was prefaced by 5 years enduring a wrist injury that has never healed, and an unexplained minor fracture in the other wrist.
I thank you for reading to this point I know it's a long story.......My questions are: Does this sound familiar to anyone else's story of bone marrow disease, or a hemolytic problem maybe? Can bone marrow disease mimic rheumatic illness? The people I have met with various rheumatic diseases seem far more functional than me; my fatigue is most severe and impossible to ignore.
I also have a doctor question: I have deliberately stayed with doctor "A" through this with whom I have a great rapport. He seems to have held back on sending me to specialists to see how this disease would develop (I was ok with this). Recently I was forced to see doctor "B" filling in for him, and have been put through a ton of tests, revealed the elevated MCV, and am being referred to a rheumatologist. I think I'm being discouraged from going back to my old doc, maybe because he hasn't sent me off to a specialist yet. I like the new doctor but I feel secure with the history I have with my old doctor. He also helped in the beginning when no one else was listening, so I feel loyal. I really don't have much criticism of him. I do think I should see a specialist but I don't want it to be a waste of time (travelling to a large center). I'd be just as happy having a bone marrow biopsy done at the local hospital, but doctor "B" doesn't think this is necessary. I feel that doctor "B" is no further ahead in figuring this out either and really doesn't know what to do with me. Dr. "B" doesn't want to worry about bone marrow disease yet. We're going to just continue watching & waiting for now. As confusing as all this sounds, it's entirely appropriate given how I feel.
Thanks for reading. I feel like I'm about to be put through a medical meat grinder that may not yield any answers. I guess the question is do I stick with my old doctor or go with the new gung-ho doctor? (I don't like changing doctors at all and am now having a really hard time evaluating them both). I am well adjusted now to living with my disease and feel far from the anxious patient I was a year ago; just don't want to go through a lot of unnecessary stuff to get no answers. Any tips on objectively evaluating doctors when you yourself do not have a medical degree?
Any helpful input appreciated.