View Single Post
  #6  
Old Fri Oct 8, 2010, 09:25 PM
Greg H Greg H is offline
Member
 
Join Date: Sep 2010
Location: North Carolina
Posts: 660
Ouch!

Quote:
Originally Posted by Ryan Jay View Post
I always get a weird pain in my tongue, as if it's about to split open.
Howdy Folks!

Thanks for all those reports. Now I know I am normal. Except I do not want this weird tongue splitting open thing that Ryan gets. And I will pass on the coronary events as well.

About ten months before I was diagnosed, I had some major chest pain and arm pain and had my wife drive me (I know, not smart) to the emergency room because I thought I was having a heart attack. I wasn't, of course, but the ER Doc found I had a hemoglobin level of 9.2 and advised I see my family doc promptly.

I promptly got around to that about ten months later, when, after my brother had a heart attack and triple bypass, I thought maybe I ought to schedule a checkup. My Hgb was 6.1; I had my first transfusion that afternoon.

Looking back at some CBCs from a half-dozen years ago, my Hgb was around 13 -- I think I have probably had relatively low HgB my whole life and had long slow slide into the single digits. As a result, I'm a little more tolerant of low levels, for which I am grateful. But I think it's pretty well documented that there's a kind of fatigue that comes with MDS that's unrelated to Hgb levels (cytokines or the like mucking up the works). And that's what makes me feel like I've been run over by a truck some times.

Y'all hang in there!

Greg
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
Reply With Quote