View Single Post
  #5  
Old Fri Sep 12, 2014, 09:17 PM
ussoccer004 ussoccer004 is offline
Member
 
Join Date: Feb 2014
Location: Orlando, FL
Posts: 21
Glad you found the site my friend! Let me tell you I was 18-19 when PNH hit me but wasn't diagnosed until I was 26 yrs old this year 2014.

I can tell you right now yours looks pretty good for having PNH still very low clone size. Believe me if you haven't already done the research you will, and definitely will freak yourself out. PNH does suck but it is a new normal, the soliris or eculizumab infusion they came out with is a "God" send. It use to be a scary diagnoses, but don't let it get to you too much. I lived at a 6.9-7.4 hemoglobin and went to the gym almost everyday (being young contributed to that determination) but now after years of prednisone my everything hurts too much.

This board is great and full of great people, very informative and supportive. If you need anything feel free to ask, I am here for you also besides everyone else too.

Quote:
Originally Posted by TLL414 View Post
Hi... my name is Tom and I have been diagnosed with PNH. No apparent symptoms' yet other c/o fatigue/tiredness. I have had just under the low range in my blood tests results for several years so my primary care doctor wasn't too concerned... but my wife was. She (my wife) requested that I see a Hem/Onc doctor because she felt that (she works in medicine) 'if a woman has slight anemia, doctor's are not too concerned... but if a man has any anemia, it should be worked up, and not disregarded."

My LDH has been high 800-1,200 and I recently received the following test results. Can this information tell me what my clone size is? I know nothing of biology!

Paroxysmal Nocturnal Hemoglobinuria and related Disorders by Flow Cytometry. Cytometry part B

POPULATION(S) GATED:
Erythrocytes/Granulocytes/Monocytes
RBCS:
Type I: Normal CD59 level. --- 76.07%
Type II: Partial CD59 deficiency --- 0.08%
Type III: Complete CD59 deficiency --- 23.83%

GRANULOCYTES:
FLAER/CD24 deficiency --- 28.12%

MONOCYTES:
FLAER/CD14 deficiency --- 55.83%
__________________
Diagnosed PNH 2014/ Autoimmune AA 2006 treated with prednisone/ Hemoglobin 10.1; ANC .55; Platelets 150K
Reply With Quote