Please go to Dr Oz web site and ask for help. Hardly anyone knows of this problem! He may be able to get this out in the open so we can get help. For one...Botox not covered by insurance! Maybe if we all concact him, he may bring this to the forefront. WE NEED HELP!
I like your idea about getting TN out in the open. I think all of us with tn have tried to explain what we feel without much success. Maybe someone could draft a letter stating our cause and concerns that we could all get behind and send to Dr Oz.
Scott
Thank you for getting back to me. No one is doing anything to research our problem. The issue is there is no money to research the problem. Not many people have the problem yet there are alot of us suffering. Can you make a draft? PLEASE! I went the first year and a 1/2 not putting my face out there as I have been worried about my job if they knew. NO MORE! WE NEED HELP!
Liz,
I am not good at making a draft, but I bet there is someone on this site that is. I have a sister that teaches journalism and English at a college that I am sure would write a letter in a professional manner off a draft. Anyone else out there that can help with a draft? Maybe we should start a discussion group to get this off the ground.
Scott
I am also dislectsic (spell?). So typing is not my best suit. If you have a sister to help...I would love that!
If we can get a draft, she would put it in the form needed. So everybody get your thinking caps on and I know we can come up with the best message to send.
There’s a lot more going on behind the scenes than you know. Do some reading on TNA The Facial Pain Association.
As far as Dr. Oz is concerned, it’s a complete waste of time. TN has already been spot-lighted on his show but doesn’t get more than two minutes. He’s been contacted on numerous occasions and sent petitions and letters and nothing happens. I certainly wouldn’t go to anyone for help with TN who advocates vitamins and diet as a “cure”. He doesn’t understand our condition.
This has already been done.
He does not respond but if more and more people contact him...frome this site...will he have a choice but to respond? There is power in numbers!!!! How do think he could not respond if hundreds of us ask for help and he does not! We can go to the news and ask why! We can puss for a response!!
I am not a big Dr. Oz fan. I do like that show The Doctors. That to me would be a more interesting show to get time on and attention through. Though it depends again on what your point is.
I think you will find that there are places researching this condition. OHSU, a teaching hospital in my state, has a neurology department that is doing research in this area. How do I know? I am shortly to be seen there and have been contacted by screening and told that the doctor is very interested in my case. They are doing trials in this area. Stanford is also a hospital/university doing research. I ran into a private clinic doing research into this area called the skull base institute.
My bet is that there are other places doing research as well, it just seems that nothing is being done because it is not something people talk about. I had no idea about this condition until I was diagnosed with it.
Greetings Gloria,
Thanks for the info, I will go the the site and read it
Scott
I agree with Gloria. It's a TV show -- just because he has an MD, he's not a REAL doctor. He's selling out on his degree to make himself famous. It's quite sad actually, because so many people believe his nonsense.
Do you guys think there is a secret cure that he's going to unveil, and that the current researchers are hiding from us? I promise you that if there's something that works, we'll know about it before he does.
Yes there maybe some doing research but the problem is that it takes BIG BUCKS! So who may be able to help us more that an Oprah guy!! I hope that all goes well for you but I don't think enough has been done for our problem. I have to try to do the best I can to get help. Dr Oz has alot of POW!
Lisa (iamrite) said:
I am not a big Dr. Oz fan. I do like that show The Doctors. That to me would be a more interesting show to get time on and attention through. Though it depends again on what your point is.
I think you will find that there are places researching this condition. OHSU, a teaching hospital in my state, has a neurology department that is doing research in this area. How do I know? I am shortly to be seen there and have been contacted by screening and told that the doctor is very interested in my case. They are doing trials in this area. Stanford is also a hospital/university doing research. I ran into a private clinic doing research into this area called the skull base institute.
My bet is that there are other places doing research as well, it just seems that nothing is being done because it is not something people talk about. I had no idea about this condition until I was diagnosed with it.
But how could it hurt to try to get help from someone who has as so much to add to our cause if we can get his attention. Why not try? As a collected group. A two second coment on his web site in volumes may bring this problen to the attention that it has never gotten. Why not try?
crystalv said:
I agree with Gloria. It's a TV show -- just because he has an MD, he's not a REAL doctor. He's selling out on his degree to make himself famous. It's quite sad actually, because so many people believe his nonsense.
Do you guys think there is a secret cure that he's going to unveil, and that the current researchers are hiding from us? I promise you that if there's something that works, we'll know about it before he does.
You’re welcome, Scott. There’s a wealth of information there.
Thank you, Lisa and Crystal for weighing in on the subject. The Doctor’s had a segment on TN. Attempts have been made to contact Dr. Sanjay Gupta from CNN, through another reporter on CNN. No response.
Our valuable time is better spent focusing on supporting the current research underway.
Crystalv,
I do not believe that they have a secret cure, I personally would like to see that more people are aware of tn and maybe get a little more understanding of what we go through. I know it is hard for me to explain to someone the pain of tn and maybe someone can come up with a good way to explain to the people you talk to. Almost everyone I talk to for the first time gives me the "deer in the headlights" look after about a minute. Behind the scenes work is absolutely great and I appreciate it. I do not think that current researchers are hiding anything from us. Please don't take our enthusiasm for reaching out as an act of lunacy. We are all hoping for any help that comes along.
Thanks
Scott
Gloria,
Just signed up to be a member of TNA The Facial Pain Association. Looking forward to reading and learning from them.
Thanks
Scott
Just remember, misinformation is just as bad as no information, if not worse. That is why I don't want/need a celebrity "doctor" taking on something he knows nothing about.
I agree with your statement, thats why I believe the more people that are educated with the correct info, including gps and other health care people the better we all will be.
I guess my problem is seeing how Dr. Oz has pushed other health issues before in real nutty, outer space, looney ways. He had a special on Aspberger's and I sat there aghast at some of the things that he said. I don't think it does any good to try and petition someone that has never taken seriously the issue of TN.
As I am new to this condition, I had not seen the Doctors episode, so I will be checking that out if I can find it. Personally it depends on what the reasoning is for why you want light shed on this issue. If you want to educate the public, honestly, the best way to educate people is to tell them your story. I know, I for one, tune out on conditions that I know nothing about or do not know anyone afflicted with it.
If the reason is to find funding for this condition for research (which I thought was why the originial idea was fronted) Dr. Oz is not the way to go about that. University's and drug companies are the ones that decide that. I highly, highly doubt that anyone in either of those industries listen to, nor get advice from, Dr. Oz. Again, that is just my opinion.
Now if we wanted to petition the CEO of a major drug company as a collective group, that i could get behind. But that is just me.
I personally have never seen the show. I still believe that getting the word out can benefit us. Before I got tn I had never really heard of it. The doctors were of no help other than the nuero saying it was in the trigeminal nerve but he couldn't find anything wrong and he couldn't have done anything about it because it would be deep inside my brain (at that time I only had numbness). I found out about tn by extensive searching on the internet. I would be open to the CEO idea or other avenues. I have an open mind to new ideas that I can say yea or nay to. A closed mind opens no doors. That is just my opinion. Anyway thanks everyone for the lively discussion, it keeps my mind working! Keep flying your plane till it stops!
Scott