Leaderboard

Having information, interpreting information and applying information is very much an art as much as science. It is great to have a repository of information but organizing and translating it to use clinically is a very complex matter. One thing which becomes apparent after interacting on forums like this over the years is the importance of a proper diagnosis first and foremost. Treatment remains a poorly understood topic largely before clusters are a bit of an orphan condition. Also there are so many mitigating factors and comorbidities. Having thousands of pages of information is impressive and a resource but Occam's razor generally prevails. Unfortunately no matter how much information is out there we will never be able to "reason" a solution. Ultimately it takes difficult to perform studies and years of clinical work. Until we have solid answers "citizen science " remains our best resource. Thanks for the repository

Annette Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!

Great news razor! Patient #9 is flying to Okieland today for his appt with doc Mike.....ch began when he was 12 and has been chronic since day 1 for 13 years....fingers crossed!! DD

Hell yeah!!!

day 5, no ch, no pain, no shadows, weather changed and I was not effected, still getting over some side effects of the steroid, I have or have had about 1/2 of the side effects listed for Dexamethasone, nothing I can't get over .... peace

A couple that I met at the Austin conference drove over from Ardmore yesterday evening to visit.....Charles has had clusters for 7 years and has been chronic from day 1......so, he's heading out to see doc Mike this next week! And Hollywood told me via PM that another Clusterhead has an appointment towards the end of the month. DD