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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sun Jun 14, 2015, 01:12 AM
salsajas1 salsajas1 is offline
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Question Pnh, Leukemia, And Lymphoma Scare Please

I had an MA scare me regarding cancers and PNH. I have slight blood in urine, and my rest of labs are pretty normal. Started with bad migraines 2 years ago with fatigue, and vision isdues. Now past 4 weeks joint pain and muscle aches. I am borderline diabetic. But MA said my labs abnormal so doctor ordered a test to rule our leukemia, lymphoma, and PNH (flow cytometry ). Now I'm scared to point of not sleeping. Tried uploading labs but no avail.
Urine is clear to yellow.
I can provide access to my labs to make better decisions....
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  #2  
Old Sun Jun 14, 2015, 12:35 PM
salsajas1 salsajas1 is offline
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help

Please somebody help me. Please
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  #3  
Old Sun Jun 14, 2015, 03:34 PM
Neil Cuadra Neil Cuadra is offline
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salsajas1,

I'm sorry that you're in this situation. Not knowing what's wrong and having all of these serious possibilities mentioned must be very frightening. Many of us have been in that type of situation, and worrying is natural when you don't have enough information to decide what to do or even what specifically to worry about. There are so many diseases with overlapping symptoms that there are many possibilities, including non-dire explanations like infections, as well as serious diseases. It's perfectly normal to be so apprehensive.

Symptoms of headaches, fatigue, and blood in urine can indicate PNH, so it's smart to test for it. I'm glad they used flow cytometry, which is more accurate than the sucrose hemolysis test and the Ham test that some labs use. If you have PNH, the doctor will judge the severity of your symptoms. Some patients need only folic acid and iron supplementation to increase red blood cell production. Patients with more severe cases need a stronger treatment approach.

People with leukemia often have abnormal levels of white blood cells or platelets, so it's a good sign that you have normal blood counts. Some lymphoma cases don't require treatment but, of course, many do. If these diseases are strongly suggested, they may ask you to have imaging tests (scans).

You may not have PNH or leukemia or lymphoma at all, and you really need a physician's diagnosis before you'll know what to do or what further questions to ask. How soon will you sit with your doctor to discuss your test results?
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Old Sun Jun 14, 2015, 06:09 PM
salsajas1 salsajas1 is offline
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My appointment is not until July 14th but they are doing labs on Friday want me off of steroids before labs. They did cbc and blood smear everything normal. Even my urine showed slight blood but clear yellow. I'm worried crazy I have newborn son. Everything normal including ldh. Just don't know if I can live over 2 weeks without knowing.
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Old Mon Jun 15, 2015, 12:31 AM
Neil Cuadra Neil Cuadra is offline
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You might ask the doctor's office if you could reschedule the appointment sooner, or have a phone consultation as soon as your lab results are in, since that's a long time to wait. Then again, perhaps the doctor didn't schedule you a prompt appointment because he or she doesn't consider your situation very serious, a sign that you shouldn't be as worried. After all, your symptoms have been noticeable but haven't needed urgent attention.

I didn't realize that you had a newborn, so you must be very busy and perhaps going a bit crazy like lots of parents with a new baby. That could also be contributing to having emotions on edge, but I don't know you so I'm just speculating.

I hope you have a number of family members around for support and who can help you avoid worrying so much about things that you can't control. Once you find out more about these symptoms you've been having, you'll be able to help decide what to do about them. Until then, assuming the worst won't help you, so I hope you can push those worries aside and enjoy your newborn.
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Old Mon Jun 15, 2015, 09:37 AM
Marlene Marlene is offline
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I am very sorry that any medical professional would have communicated this type of information to you based on your symptoms and somewhat off labs. It serves no purpose. If your blood smear is good and CBC is good I would not worry about any blood cancer at this point.

If the blood in your urine was not visible to you, but shows up in the urine test results, it does not readily mean PNH. Women, when menstruating, can have traces of blood in the urine. That's not uncommon. And as you know, an infection can cause it also. If you are taking aspirin or other OTC pain drugs, they can cause blood to show up in the urine.

I don't know what role the MA plays in your doctor's office but if it's Medical Assistant, then she should refrain from discussing your medical diagnostic work-up with you. MA's usually do vitals, blood draws, etc.

Even when doctors do not really think you could have a cancer, they will still do some tests to rule it out. Many times, diagnosing a patient is process of elimination. This true for Aplastic Anemia. They rule out Leukemia, MDS, any genetic blood disorders and nutritional deficiencies first. Just because they test for it doesn't mean they think you have it.

You just gave birth to your child which is hard on the body and so your hormones may not have fully recovered. Have you discussed your issues with your OB/GYN regarding postpartum issues that may be contributing to some of your symptom?
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Mon Jun 15, 2015, 12:48 PM
GoodDay5150 GoodDay5150 is offline
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Neil is right abt the best way in dealing w/ health issues. I've told ppl that the best way to deal w/ health issues is to be concerned but try not to worry. Another thing to consider is getting a 2nd opinion , and to also make sure that the dr you are working with is very familiar w/ hemo. issues. Please let us know what, if anything, is diagnosed.

Mario
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