A Pointless Waste of Time...

So today's appointment was a pointless waste of time. First, our lovely hospital scheduled us with a NeuroSURGEON not a Neurologist.

Slight difference.

So he told us nothing about Xander. What he did tell us was alot of misinformation about Neurofibromatosis.

He told us genetic testing was completely accurate. It is not. If you test positive, then YES you have NF. You can falsely test negative and still have NF. It has to do with where the gene mutation is. So no, the test is NOT completely accurate.

He told us that 6 criteria must be met in order to be diagnosed with neurofibromatosis. And that is false as well.

It was just so ridiculous. But now we know why we had a feeling we should keep both appointments. If it is worth anything, the neurosurgeon today thinks highly of our neurologist we will see on Tuesday.

$27 dollar lesson and a missed naptime times two.

*sigh*

Stephanie