Hello!!! thank you so much for accepting me in the group. Im new to all this. I dont know if I can say I have just been diagnosed. My neurologist told me I have to have a genetic test done ( Im dealing with my insurance to see if it can cover something and to see what lab would send the tests to the US, I live in Puerto Rico and there is no lab here that does this type of testing). Im 41 years old. I have had the white patches on my leg since I was born but NO ONE ever told my parents about them. When I was growing up my grandmother took me to see a dermatologist and she always treated them as vitiligo. Had to undergo treatment after treatment and they said that the vitiligo had stopped!!!! In my teens I started with small plaques on my nose but they didnt bother me so I pretty much ignored them/ About 8 years ago a got a MRI for stomach pain and they saw a mass in my right kidney. Got a small part removed and that was like...ok ...a angio...the Dr said no big deal. It happens..... But a year ago my dermatologist starting adding all things together and said You probably have TS. I didnt pay much attention. Weeks ago I went to a neurologist looking for answers on why I may be having visual problems and I mentioned what my dermatologist thought. He sent me a brain MRI and it came back with a small lesion on the front right said. The radiologists mentions a lot of things but also compatible with tuberous sclerosis. Now my neurologist has sent me for a EEG and a second opinion. He is pretty sure that this is not the reason for my visual problems but wants to be sure. He told me that the genetic testing is really expensive and that most insurances dont cover them. Can someone give me more info on this? I have a lot of questions right now in my head. I have two kids and at the idea of this being passed on has me heart broken. The Dr mentioned a 50 % chance of being passed on. That I know of there is no one in my family with this. He also said that it can be possible that parents pass it on even if they didnt have a onset of the disease? It would really help to hear your comments. I am also a thyroid cancer survivor. I have my own Facebook page and the support people give and share is great. Looking forward to hearing from you. Thanks And if by any chance there is someone from Puerto Rico here please let me know. I dont know what to expect here in PR with this. I was looking in the internet and it seems that statistics here put it in a very low range. This makes me think; do doctors here know how to approach TS?
Posted on: Fri, 07 Nov 2014 19:58:43 +0000