Blue shirt – I am not substituting this for medical advise. In the past 2 months I’ve seen a geneticist, an optomologist, an NF specialist, Radiologist for an MRI and have an appointment with a neuro onc next week. It’s just that when you suddenly get hit with something you never heard of before (although it is supposed to be the most common genetic disorder) you just want to connect to others with the same issues, even though the progression is going to be different for each person.
So anyone out there dealing with this too?
