OMG!!!! How did I find you all. Please help I am so very tierd. Now at 12yrs I was diagnosed with sickle cell disease after having frequent seizures and not being able to play without severe leg pain,back pain. As an adult while carrying my son I was in intensive care with a blood infection but over came that. I have always had bad episodes of pain and swelling, numbness and am still treted for some type of sickle cell. I have asked to go home and was told that I was sickling so bad untill I c/n be discharged. I have had a heart block, seizures , pnemonia x3 last year and a host of other problems. I had a port placed years ago because of poor veins.
Last year I sent my lab results to Dr. Eckman in Georgia and they did call back stating that they were shocked at how the lab came up with the diagnosis of sickle cell trait, these test were done with a new doctor who said I was drug seeking in so many words. Dr Eckman felt that according to the lab report I faxed to him I had sickle beta Thalassemia and should find help asap. My neurologist stated that my EEG was very abnormal.
If I go to hosp today test will say positive, if I go next week dr will say you have nothing go home and seek help. I am so.........tierd of this you just don't know. I was declared disabled years ago due to my problems and hospital stays. I recently saw yet another doctor who said your ferritin is low just take a multi-vitamin and you only have 41% of sickle cells. You should have no problem. She went on to say she was sending letters to my doctors and I asked that she allow me to share my own results when rudely said "well I sent your doctor a note stating you didnot want him to have the results" I couldnot believe she did that. Anyway, at times I cannot get out of bed , cannot walk seem to have a great deal of trouble with my right leg and hip .
My fingers /hands swell and get very dark in color and feel numb. I have even had the worst pain in my mouth one time and did get to e.r and was asked "did you know you had sickle cell disease? for instance twenty five doctors....17 may say I have the
disease and 8 may say I don't. Anyway please review the following test and let me know what you think and I will then find the appropriate doctor. I do plan on going to Georgia to see Dr Eckman before year ending. I could go on and on but I think you get the picture here oh and by the way THANKS EVER SO MUCH AS I AM LAYING HERE WITH BAD CHEST PAIN UNDER MY RIGHT BREAST AND DON'T KNOW WHY. ALSO THIS LAST DOCTOR SAID MY SPLEEN FELT A LITTLE ENLARGED. I really APPRECIATE THIS SITE AND A HIGHER POWER DIRECTED ME HERE AS I HAVE DONE NUMEROUS RESEARCH AND NEVER FOUND YOU ALL.
WILL BE WAITING ON A RESPONSE EXCUSE SPELLING I'M SO NERVOUS JUST FOR FINDING THIS SITE.
TEST RESULTS
Hemoglobin Variants HPLC with confirmation by IEF
TEST IN RANGE OUT OF RANGE REFERENCE
HEMO A 56.3 L 95.0--98.2
HEMO A2 3.8 H 1.8---3.2
HEMO F 0.5 1. OR LESS
ABNORMAL HEMO 1 39.4 H
ABNORMAL HEMO 2 0
INTERPRETATION: Abnormal hemoglobin screen. Abnormal hemoglobins are present and are identified as S by iscelectric focusing
The results are consistent with sickle cell trait.
Have other results as well .
THANK YOU.....MEme