When is it enough? - Page 2

TCS really DOES have big shoulders! I've written it myself to others... I'm just one of those people where it's so much easier for me to give than to take. But despite support from people who understand and don't judge me or the decisions Gary has made (especially Chris, which you've helped me more than you could ever know ), every once in a while I just need to put it out there. This is really hard sometimes. Well - all the time. But sometimes it's just too much, and I need hugs and encouragement. When my light burns dim, it needs some fuel, and I thank ALL of your from the deepest part of my soul, truly, for your support, your encouragement, your kind words, and for reigniting the hope ON WHICH I MUST FOCUS.

Actually, we wrote him directly, and have remained in contact. Gary's pain management Doctor flew out to meet him at a neuro conference, and he's provided significant consulting services at no cost. (For those who don't know Dr. Goadsby is the world's leading expert on the condition, though Dr. Silberstein of the Jefferson clinic is a close second - they've published together).

It definitely doesn't hurt to try. As it requires a brain surgeon to do it, Doc has offered to obtain the equipment at cost, and has talked to the surgeon at Columbia that has experience. The $80,000+ is with the discounts. The small permanently implantable devices cost a lot. The problem is that because he's got atypical symptoms, he doesn't quality for any of the studies (as he doesn't necessarily have a good chance for a positive outcome, and let's face it, that's part of what they look for in accepting candidates into those clinical trial programs).

I didn't mention, but Gary additional has problems with extreme fevers. The hypothalamus is considered the seat of the problem with his condition, and it appears to be just broken. The hypothalamus controls your body clock (non-existent in Gary), your pituitary gland and all your hormones (all wrong in Gary), and your internal body temperature. He has bouts of seizures, where he starts shaking/shivering, and his body temp starts heating up - to 105, 106, 107 degrees. We use cool clothes, and then it slowly comes back down. His normal is 97.2. It takes 3 - 7 hours to do the full round trip. But you can imagine how that leaves him feeling. It's not something from which you recover right away. ...and yes, we did the infectious disease doctor route. He ended up at the top doc in the country, which is on the east coast. He runs the largest research budget in the country, and accepts only 3 new patients a month. The diagnosis: Central Fevers. Just means no known cause.

MA, I honestly don't remember if he's been tested. I expect they did when he went through the infectious disease process trying to figure out the source of his crazy fevers, but you're right - he exhibits many of the symptoms. I'll call the center to ask, because I don't have those records with me.