I hope you're all having a nice weekend.
I'm curios to know why you might have been referred for genetic testing for NF2 or how/when it was determined that you have it.
I was diagnosed with a small AN in May and at my first appointment with the ENT, I mentioned having developed cataracts in my late 40s/early 50s. The doctor was immediately concerned and asked if I'd ever had a spinal MRI. Well, no. The first MRI I've ever had was the one in May. He then referred me for genetic testing/counseling, along with various other referrals. I had a long talk with the NF2 nurse on the phone and, in the end, I'm not sure how important it is that I follow through with this referral. I know 40s/50s is kind of young to develop cataracts, but not THAT young. The genetics nurse wasn't really sure either. She DID tell me that this ENT refers "a lot" of people for NF2 testing. That gave me pause. I feel fairly ticked, to be honest, that the doctor was willing to plant the seed of fear and anxiety that I have a rare genetic disorder, if I don't even truly fit the criteria. My parents and one sibling are deceased and there are no autopsy reports. My other two adult siblings are pretty ok so far and are not dealing with anything neurological.
I would like to think that,before a doctor would choose to put a patient through this, he/she would have a damned good reason, but I don't think that's the case for me. I feel that it has only needlessly added another layer of worry on top of my concern about this AN.
How did things unfold for you?