I just found this site. I was an active member on braintalk communities before it went down. I would love for it to come back. Any way. Here is a bit about me and my daughter.

My daughter Racheal or Rae for short was dg with TN 1 and 1/2 years ago. She is 4 years old. I am Crystalina and I was recently dg with TN and TMJ. I am happy to have someone to talk to after all this time.

Nice to meet you all.

Crystalina

Hi there. It's good to meet you.

I live with TN as well, and daughter was dx'ed with TMJ just a couple of months ago.

I'm glad to be able to talk with others who know specifically what I live with.

KD

Hi Crystalina and Kimmy Dawn. I'm Julia but have gone by Jo for years Take your pick, ok?

I have TMJ as well as a bunch of other things, but what can I say, I'm old. Its nice to meet you both and I will be back around to see how y'all are doing.

I'm going to have to visit the specialist for TMJ, can't remember his title. Maybe you guys can give me some ideas.

Crystalina, have you contacted anybody that frequented your forum at BT? It's kinda of word of mouth , but slowly friends are coming in.

I had been at MGH/BT for many years. My MIL has Alzheimer's and she lived with us a long time. We had to place her several years ago, but we are still involved with her care. Learning to take care of her was the reason I came to BT to start with.

My health got so much worse and it became impossible to care for her at home.. She doesn't know us anymore. So sad, especially for hubby.

If JL gets his forums back up I don't plan to go back. DocJohn is so kind and caring and very gracious to allow us to come here. I like it here.

Well, I'll mosey on, but wanted to say hi and welcome if you're new. I'll be back and chat, maybe get some answers,eh? Nice to meet you both. Jo

Hi JoJo and thank you for the welcome.

I'm not sure of the specialist you'd be seeing for TMJ (I haven't gotten that far with my daughter yet). I see a neurologist for my TN. Basically, I see him strictly for pain management. He did offer a procedure that may or may not help (apparently it's a 50/50 thing) which I declined. The risks were WAY too high...anything from it affecting my sight, brain, with the worst case scenerio being my ending up on a ventilator for a period of time. I explained that I manage too well pain-wise to consider those risks at this point.

Many thoughts to you, hubby and mother-in-law.

I've known DocJohn for several years now as a forum member and can say, "What you're seeing is what you get." He's consistent and caring. He's the real deal.

Thanks again for such a warm welcome.

KD

Thank you for the warm welcome. The only person I see for my TMJ is a dentist. He has worked wonders. I now only take pain meds as needed. When this first started I had to take them every four hours. YUCK! My dd sends her best as well. She loves meeting people with TN. She feels so alone being one of the few children with TN. We have been lucky to meet others on line. Hope you are all feeling well again. No I havent talked to anyone from BT about BT2.

Crystalina

Hope you and Rae are doing well - at least as we all define that. New school year underway, so I imagine you're busy busy. For me, the fall means cleanup and tidy in the garden, picking and digging and storing the winter goodies, filling the woodshed and taking time to look up in the sky, where every day this week there have been eagles, one or more, doing their lazy circles overhead. I try to imagine how the world looks to them, how tiny my little chores must seem, and how earthbound. But even with my feet on the ground I think a little bit of me rises and soars when I see them. See you back here soon I hope, Nancy

Hi and welcome! I look forward to learning more about you and your family, hopefully we can all offer the best support possible!

*Hugs*

Hi Crystalina,
How are you and Rae doing?

Tracy.x

We are doing wonderful. And yes the school year is upon us again. But luckfully Racheal took to school easily. I was afraid since we just moved that she was going to be difficulut. Because as we all know my child LOVES to be difficulut. She is flying thru her work. She in on to addition already! She is getting too old. IMO. She is also planning out her birthday party. Which isnt til Nov 21! She wants to do chuckie cheese. I think not. What is really keeping us busy is the move, school, 3 birthdays, Halloween, and court battles. Anyone want to come take over for a day or two or 375?

Crystalina