I have always had "little red spots on my legs" but never really thought anything of it. They aren't as big as the one they show on google of course.
So I'm not sure if that would have been a sign that something was going on.
I found out about the macrocytosis about 8 years ago. My MD figure it was just something we should watch. (We don't have very thourough Dr.s here) So we watched. and every year the MCV went higher but nothing else ever was flagged until the shortness of breath started getting to bad.
I have had 2 BMB. Both have shown no abnormalities. I must tell you that I was scared and nerveous for the first one. I had just had my first tranfusion and had no idea what was happening to me. Just the idea of the whole thing was scary. The Dr that did the extraction had everything wrapped up in less than 5 minutes. I think my panic caused me more grief thatn the actual proceedure. The second one when extreemly well. Again it was done in less than 5. We were 6 patients lined up in a row and the Dr. came in and was finished in 25 minutes. I was nervous but I talked my way through it and before I knew it, he was done. Mind over matter sometimes works wonders.
But after having 2 BMB, a thymus scan, a thyroid complete work up weekly blood work , 2 tranfusions ( 4 pints and 2 pints) and a crazy dose of prednisone, things are normal. It was a 2 year roller coaster ride.
Let me know what they come up with after your BMB.
Have they done a Thymus scan yet?
I am going for blood work every three months now. My July results where all normal. Not even an elevated MCV. I will be going on Thusrday, and Hopefully will get the same results.
I've had a few people mention red cell aplasia as a possible diagnosis but my Hemo. had ruled that out because I had Macrocytosis for so long.
Let's keep "plugging away" at this.
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