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inali (@inali)

Intravascular hemolysis

Blood Cancers & Disorders | Last Active: Apr 26 12:45pm | Replies (4)

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@oldkarl

@inali I don't know much about your disease, but maybe I can help a little. Thing is, you can use this time to get yourself ready for the appointment. First, check out what the best online sources have to say about it. Google, Wikipedia, Mayo. Take lots of notes. Then go to the NIH (national institutes of health) and NCBI ( or is it NBCI-I can never remember), especially OMIM.org. Enter the name of your disease, and, if they have it listed, it will pop up with a lot of info. Nose around until your appointment comes, Then you will be ready for the Hematologist. But, in today's world, you have to be your own best doctor. I have had my whole system gone over by the Mayo folks and 20 other fine clinics, but the best medical work has come from my time with these resources. I can not make the formal diagnoses, but I can get into the right area. And get your whole genome sequenced by a good DNA group such as LivingDNA.com, Sequencing.com, Nebula, Ambrygen, or any of the others. It costs about $400 for the groups to sequence the whole genome, and another $200-300 if you want them to interpret it. But you can do that yourself if you want and are willing to study. Then you will REALLY be ready for your appointment. I have several pathogenes, including Gelsolin, Fukatin Limb Girdle Dystrophy, Sjogrens, many Cancer locations, Diabetes II, and all their little related so-called "minor" inconveniences and death traps, but after this work by myself and my clinics, I KNOW what I have and what to do about it. Have fun. I can bore the H___ out of anyone, including the neighborhood busy-body and my pastor.

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Replies to "@inali I don't know much about your disease, but maybe I can help a little. Thing..."

Thank you @oldkarl for your reply. I appreciate the tips you’ve shared and I’ll check them out. I struggle with keeping a good attitude about all this. One day I just want to hide my head in the sand and pretend nothing is wrong (I.e. a bad day), and the next I’m reading everything I can get my hands on (a good day).