Neurofibromatosis Research.com

I learned I have NF through my child, Im currently 30 years old and all my life I have been told they were just cafe'au lait spot nothing harmful- may as well say alot of birth marks. So when my child was born with alot of birth marks his doctor took the issue very seriosly and sent us to a specalist. So far he has been doing well no issues have come up with him so THANK GOD FOR THAT! Now me on the other had, for 30 years I have been doing fine now all of a sudden NF1 wants to take control of my life, Im having seizures, I can barely stand for no more than 5min at a time. I recently lost my job and I just dont know what to do? My current doctor a neurologist, that I go to I believe does not know what NF is! I have told him and he is just like oh, okay! But I recently took my son for a check up to a doctor that specalizes in NF and he looked at me like I was crazy, he told me my dosage of meds should be a bit stronger, and I should be taking them more often throuout the day! Im going to start seeing him, I will have to pay out of pocket since my insurance wont cover it, but I think it will be worth it!