Hi!! I'm Jessica and I came here first to discuss and find out information about jaw cysts, which I seem to have, along with a possible genetic condition called Gorlin Syndrome.... I have yet to get genetic testing and going the route of talking to dentists about this is NOT the right path, as none of them have ever heard of it, and seem to only want me in the office if I get x-ray after x-ray, which actually can potentially cause my condition to worsen (that is if I have it in the first place?) My dermotologist was the one that wrote it down and said "I think this is what you have" after I was diagnosed with many basal cell carcinomas and melanoma at the age of 24. I also bring with me some heart issues, although not initially neurological they certainly effect my brain and are effected by the sympathetic and parasympathetic nervous system. The first is PSVT- Paroxysmal Supraventricular Tachycardia, which when stimulated by nearly anything, my heart can go upwards of 170 bpm as measured during halter monitoring and the secondary diagnosis is sinus tachycardia. Not really a diagnosis as much as a symptom, really, but it has managed to mold my life in some particular ways.

I work with people with developmental disabilities who desire competitive employment in a community based, integrated setting with nondisabled peers, so I tend to think of my problems as minor, and something I can struggle through. I see my consumers going to work and doing their best, overcoming so many obstacles, and always moving forward, and sometimes taking a few steps back. Some of them work even though they have brain tumors that have caused loss of vision and hearing, some work despite their autism and the odd reactions they get when they try to communicate with their peers, some work despite being barely able to walk, and some work from their wheelchair.

Welcome JeBrooks.

Hello Jessica

Welcome to the NeuroTalk Support Groups.

I see you've found Dental.

I know there are a couple of really old threads for Gorlin Syndrome. I used the keywords "Nevoid Basal Cell Carcinoma Syndrome". [Old name.] You could try the forum search feature.

Forum Search

If you need any help just write back here and we can help you out.

take care.

Jessica,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene