Maybe the Dr.s are just not explaining things to me the way I need to hear them so I understand???
What I know, I was diagnosed with an AN right side 2.0x2.4x1.7 my mom had been diagnosed with an AN on her left side. Everything I read from all accredited sources say that AN's are not genetic but NF2 is. The genetic testing on my mom came back normal(no NF2) they are retesting further but say it is unlikely they will find NF2...okay this is where I get confused...if AN is not genetic but she is not positive for NF2 then that makes us really rare from what I am told and what I read...so if it is "unlikely" that an AN would be in a mother and daughter, then how is it so much more unlikely that the mom has an AN and the daughter had NF2? I hope and pray I do not have NF2, but I have children and I would like to KNOW for their sake that it is just an AN. I have been denied a full body scan because my mom's genetic test came back fine and I have been denied a genetic test because her test came back fine....because it is "unlikely" I have NF2 since she doesn't...but please follow me...it is ALSO "UNLIKELY" that both mother and daughter have an AN...to me it is even more odd that we have them on opposite sides.
I was also told that my AN was not the "normal" mushroom shape...so I am just wondering why I can be rare and unusual in a few areas but only the ones they say is okay??? I mean no disrespect to the men and women who have gone to school for years on end and perform life saving surgeries...I am just not okay with somethings being to me, not certain one way or the other. I cannot live with "unlikely" when it comes to my health and the only thing standing in the way of a definite is a 300.00 genetic test that insurance and I pay for...how is that not approved?
